Family Voices Indiana

HB 1367 rally at the statehouse 1/25

2012-01-24T16:31:00.001-05:00

Family Voices Indiana shares the following alert from Hear Indiana regarding a rally they are sponsoring in regards to HB 1367. You can find more info about the proposed bill here.

Here are the details you need to join Hear Indiana tomorrow:

Please plan to arrive at the Indiana State House at 7:30am (if at all possible) to allow ample time to go through security and proceed to the House Chamber. Those testifying should report to the 3rd floor (House Chamber) and sign-in. All other supporters should proceed to the 4th floor House Gallery.
Please wear black so we are unified. We will have brightly colored red/white/blue ribbons for you to wear as well.
Please visit HearIndiana.org/HB1367 for maps of the area and parking garages nearby.

If you cannot attend the hearing, please make sure you have contacted your legislators regarding HB 1367, no matter where you stand on the issue. Your voice matters.

HB 1367 proposal for deaf and hard of hearing education

2012-01-16T11:28:00.001-05:00

Family Voices Indiana urges its members to educate themselves regarding proposed legislation that impacts children with special health care needs this session. You can find a list of all proposed bills here.

We share HB 1367 which could impact education for the deaf and hard of hearing:

Deaf and hearing impaired education services. Establishes the center for deaf and hearing impaired education to ensure that children who are deaf or hearing impaired acquire optimal communication and academic abilities. Requires the office of management and budget to determine an appropriate agency to provide office space and staff support for the center. Transfers the outreach services and consultative services to local education agencies to assist in meeting the needs of locally enrolled students with hearing disabilities of the Indiana School for the Deaf to the center for deaf and hearing impaired education. Provides that the Indiana School for the Blind and Visually Impaired and the Indiana School for the Deaf are subject to accountability provisions for performance and improvement, but are not subject to sanction provisions.

You can read the entire proposed bill here.

We encourage our members to share how this would affect their child by contacting their legislators. You can find out who your legislator is here

You can find contact info here.

If you need help with how best to share your story, or contact your legislator, please contact us at 317 944 8982 or info@fvindiana.org

Featured resource for January newsletter: talking to your legislator

2012-01-15T16:34:00.004-05:00

We will be introducing the health information specialists (HIS) and family leadership specialists (FLS) for the family to family health information center at Family Voices Indiana over the next few newsletters. Their biographies will also be included on our website. Every contractor at our center is a parent of a child(ren) with special healthcare needs and/or disabilities. We have personal experience navigating the systems and services in Indiana. We look forward to learning more about your families as well.

Traci Kurmay is one of our HIS for the Indianapolis area. Traci resides in Avon, IN along with her husband and their two wonderful children, Makenna and Maison.

Traci’s desire to help families navigate the world of special needs comes from her experience with her own two children as well as her personal battle with childhood cancer. Her daughter Makenna was born extremely premature, 3 months early. Makenna weighted only a pound and as a result has several special health care needs. Her son Maison is a vibrant little boy who has Down syndrome. The children keep Traci busy as the family is very involved in their community.

After the birth of Makenna, Traci began volunteering and offering assistance to other families in her community. Upon the arrival of Maison, Traci knew her place was to help other families in need.

Traci has worked as the Parent Support and Education Coordinator for Down Syndrome Indiana as well as her current position as the Family Trainee at the Riley Child Development Center. Traci proudly services on the Speedway United Methodist Special Needs Ministry as well as an active board member for Optimist Miracle Movers. Traci received her bachelors from Indiana University and is currently working on her master’s degree in special education.

Michelle Green is one of the FLS in the Indianapolis area. She feels that advocating for special needs families is her calling and is enthusiastic about serving in this capacity.

She and her husband are the proud parents of four wonderful children. Michelle’s passion to help others stems from her experience working and volunteering in the not-for-profit sector as well as being the mother of two children with special healthcare needs.

She is an active volunteer for the March of Dimes and various nonprofit groups and organizations. She is also a member of her church outreach ministry and volunteers for her local elementary school.

This month’s topic is not are usual program highlight. Instead, we are highlighting the legislative session since it can impact services for children with special health care needs.

You can read FV’s entire guide to the legislative session here:

http://www.fvindiana.blogspot.com/2012/01/guide-to-2012-legislative-session.html

One of the best ways to advocate for your child is to develop a relationship with your legislators. In this section, our HIS, Kerry Bonney, shares her own experience:

It was with trepidation that I stepped into the marble-floored hall of the Indiana Statehouse. As part of a job-related course, I had been given an assignment and was determined to complete it, despite my qualms. I was to meet my state legislators, both representative and senator, and briefly tell my story as a parent of a child with special needs.

A quick check at the desk of the senate area left me feeling relieved, as I found out the state senate was not in session for the day. However, it was clear from the noise and number of people on the other side that the representatives were indeed meeting. I slipped up to the party desk of my representative, and asked the clerk for an audience as a constituent of the legislator’s district. The clerk directed me to a small area where I was to wait until the honorable representative arrived.

My hands were sweaty and my heart was pounding! I had never done anything like this! I had been instructed to introduce myself, to briefly (under 5 minutes) tell my story, and then offer my thanks and leave. I could do this, right?

Fortunately, a family was waiting along with me in the side room, and I stood back, hoping they would take the lead and visit first. Sure enough, they did. This was obviously not their first visit with the legislator, and he greeted the family members warmly and sincerely. Strengthened by this family’s interaction with his honor, I stepped forward and introduced myself. The representative made it easy for me, thanking me for my visit to the statehouse, and asking me how he could be of service. Surprisingly, the words I had practiced came out smoothly! I explained that I was mom to a child of fourteen years, who had multiple medical needs and that my husband and I, being small business owners, could not provide the care our son needed without the support of Medicaid, a program that was currently in danger of budget cuts.

He quickly assured me that he was against any cuts to this program, and actually asked my opinion on a specific area of the issue. After thanking him, I left the statehouse.

Ironically, just a few weeks later, I crossed paths with this legislator at a local function. He asked how things were going, and I laughingly told him “they could be better.” He asked the specific problem, and I explained. He told me he would see what he could do, and I thanked him – not really expecting anything to come of our short visit.

The next day, however, I received a call from a state official with the power to do something about my problem. The official identified herself as having been contacted by the representative that I had spoken with the night before. To make a long story short, my problem was quickly resolved.

Families are often surprised when, as an advocate, I advise them to contact their legislator regarding an issue. The relationship, however, can be a valuable one. Not only can the legislator be a resource for you, but you can be a resource for your legislator. It would be unrealistic to assume a legislator is well-versed on all bills that come across his/her desk, and occasionally he/she has no reason to vote one way or another except upon party lines.

One person I know tells the story of how one letter impacted the way a bill was voted upon. Your voice can make a difference!

The following tips can help make your visit with your legislator effective:

1. Try to schedule a visit your legislator in your hometown when there is no specific issue or crisis. Simply introduce yourself as a constituent and your child, if possible, and briefly share your story. If you can’t take your child, a picture would be helpful.

2. Keep you visit brief, be prepared, and be clear. Practice before you go and stick to the topic.

3. Take time to listen to your legislator and to learn how he/she feels about the issue. If he/she is unclear on the issue, take the initiative and offer to send along resources or more information.

4. Seek ways to keep the relationship going. Send a thank-you note and make it a point to say “hello” when at any shared function, visit the statehouse, and keep in contact by email, mail or phone.

If you need guidance telling your story to others, please contact us at 317 944 8982 or info@fvindiana.org and we’re happy to help!

We invite you to sign up for our monthly newsletter here.

ACA Update: Essential Health Benefits and What They Mean for You

2012-01-07T10:13:00.000-05:00

By Emily McKinley, Health Information Specialist

On December 16, 2011, the Department of Health and Human Services (HHS) issued a bulletin further defining Essential Health Benefits (EHB), a critical element of the Affordable Care Act (ACA). This provision of the act was initially designed and included in the legislation to ensure all Americans have affordable access to a comprehensive health care insurance policy.

Essential Health Benefits define the categories of care that must be covered by all certified and non-grandfathered insurance plans beginning in January of 2014. (Grandfathered plans include some group and individual plans created and sold on or before March 23, 2010. For more information about grandfathered plans, please visit http://www.healthcare.gov/glossary/g/grandfathered-health.html.)

Ten benefit categories are considered EHB. Those are: ambulating patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services; prescription drugs; rehabilitation and habilitative services and devices; laboratory services; preventative and wellness services and chronic disease management; and pediatric services, including oral and vision care. What was unclear upon the announcement of the legislation was how EHB would be further defined to provide comprehensive and relatively uniform care.

The December 16^th bulletin released by HHS outlined a policy by which the States were granted considerable freedom in defining the scope of EHB while still setting regulatory “benchmarks” that each state must meet. According to the bulletin, in choosing the benchmark system, “HHS sought to balance comprehensiveness, affordability, and state flexibility and to reflect public input received to date.” Furthermore, HHS stated, “benefits must not be designed in ways that discriminate based on age, disability, or expected length of life, but must consider the health care needs of diverse segments of the population.”

The benchmarks that States may use to define the scope of EHB are based on one of four types of preexisting insurance plans. Those plans may be pulled from:

One of the three largest small group plans in the state;
One of the three largest state employee health plans;
One of the three largest federal employee health plan options;
The largest HMO plan offered in the state’s commercial market.

In many cases, States may find it necessary to supplement benchmark plans to include all EHB categories as well as any currently operating state mandates, such as Autism Mandates. In these cases, the States may choose to pull EHB definition and scope from a second benchmark option. In all cases, already enacted mandates will remain effective until 2016, at which point an HHS review will be completed.

HHS acknowledges sparse precedent among the benchmark plans for certain EHB categories, namely habilitative care and pediatric oral and vision care. There is concern and debate regarding the “advantages and disadvantages of including maintenance of function as part of the definition of habilitative care services.” HHS is specifically soliciting comment regarding these categories of EHB as well as benefit design flexibility with regard to benefit substitutions, and updating and assessing EHB.

As always, Family Voices Indiana encourages consumers to learn how EHB definitions may affect all aspects of the care your family may need and to comment appropriately to HHS. Without federal regulation of EHB, states may vary widely in the scope of coverage offered for the various benefits, which could significantly impact consumers’ coverage and the true comprehensiveness of the ACA. While the bulletin does outline the manner in which States will define coverage for EHB, many questions remain, such as the true scope of each EHB category as well as the breadth and frequency of services offered within those categories. Furthermore, consumers residing in states not governed by diagnosis- and treatment-specific mandates may suffer from cuts to existing comprehensive and quality insurance policies.

While EHB must be offered by insurance programs, the bulletin addresses only the scope of benefit definitions. That is to say, EHB cost sharing between the insurer and consumer are not specifically regulated by the ACA. Therefore, deductibles, premiums, and co-pays relating to EHB may vary.

Public comment on these and all topics regarding EHB may be made via email to EssentialHealthBenefits@cms.hhs.gov. Comments must be submitted before January 31, 2012.

To read the bulletin in its entirety, please visit: http://cciio.cms.gov/resources/regulations/index.html#hie.

For additional information about the bulletin and to access fact sheets regarding EHB coverage and plan comparisons, please visit: www.hhs.gov/news/press/2011pres/12/20111216c.html

Sunny Start family and professional survey

2012-01-06T16:15:00.001-05:00

Indiana Families and Professionals are invited to share their thoughts on early childhood systems and services by completing a short survey. Your input will support the work of The Sunny Start: Healthy Bodies, Healthy Minds initiative, a comprehensive, collaborative, statewide effort funded by the Maternal and Child Health Bureau’s (MCHB) Early Childhood Comprehensive Systems grant. The survey is online at https://www.surveymonkey.com/s/SunnyStart

If you prefer a paper version of the survey, please contact Sunny Start, ryrodger@iupui.edu, or Family Voices Indiana info@fvindiana.org

If you have questions, please contact:

Rylin Rodgers

Emerald Consulting

The Sunny Start Initiative

ryrodger@iupui.edu

765 676 9262 Office

765 891 0075 Mobile

317-944-9760 Fax

www.sunnystart.in.gov

DDRS quarterly bulletin: waivers, services, First Steps and more.....

2012-01-06T13:34:00.003-05:00

Family Voices encourages its members to stay up-to-date on information that may affect their family. We've embedded the latest quarterly bulletin from DDRS to help you learn more about disability services in Indiana. We appreciate DDRS's efforts to share this information more readily with the public and we hope you will take advantage of this opportunity.

Here are some highlights from the bulletin:

DDRS Waiver Manual 2011 DDRS has added a Waiver Manual to the website to use as a guide for the DDRS’ Waiver program.

Provider Questions and Answers Provider questions and answers from the October Quarterly Meetings are now posted on the BDDS web page under Quarterly Provider Meetings. This page will be updated after each Quarterly Meeting once all questions are complied and answered.

Waiver Journey DDRS recently added the Waiver Journey to the website, which outlines how to apply for a waiver and the steps one goes through to receive services.

BDDS and VR (Voc Rehab) Referrals: BDDS and VR have streamlined the referral process. For those individuals of working age BDDS now scans referrals directly to VR when individuals apply for services. In addition, VR contacts BDDS upon individuals applying for VR services so BDDS can confirm/complete eligibility prior to beginning supported employment services. There has been a steady increase in referrals to VR from BDDS. Referrals to and from VR are now being tracked in DART.

SEFA (supported employment follow along) work group was developed by VR with input from BDDS field staff. Proposed new SEFA forms were developed by VR to include additional information to better monitor the transition and follow-along process.

IPMG is making final modifications to the case management training developed by the Bloomington group. Once completed, IPMG will begin training case managers at their district meetings as well as have the training available with a voice over for new case managers as they come on board or for existing case managers to use at any time.

Children’s Group Home MOU A Memorandum of Understanding (MOU) is currently in development with the Department of Child Services (DCS). The MOU will address children’s group home placements for wards of DCS who have an ID/DD and meet ICF/MR Level of Care. Further details will be available soon when the MOU is finalized.

DD Waiver Second Amendment: The DD Waiver Second Amendment has been approved by CMS with an effective date of October 1, 2011. Highlights of the Amendment include:

 The legislated requirement of accreditation has been added to the provider qualifications of all providers of day services

 Community Based Habilitation (Group), Facility Based Habilitation (Group), Prevocational, and Supported Employment Follow-Along service definitions have been modified replacing ratios with applicable group sizes

 Allowable Activities of service definitions have been relabeled as Reimbursable Activities

 The term Intellectual Disability has replaced prior references to mental retardation wherever possible

 Reimbursement is no longer granted under any waiver funded service for participation in Individualized Support Teams

 A new Emergency Placement reserved capacity priority criteria category has replaced categories previously titled:

o Eligible individual in other setting whose health and welfare is threatened

o Eligible individual with loss or incapacitation of the primary caregiver

o Eligible individual with an aging primary caregiver

NOTE THAT INTERPRETIVE POLICY CLARICATIONS RELATED TO THIS NEW CATEGORY ARE FORTHCOMING

The 40-hour-per-week limit applicable to the delivery of Residential Habilitation and Support (RHS) service hours to an adult waiver participant by any combination of parents, step-parents and/or legal guardians of an adult waiver participant has been further modified. The 40-hour-per-week limit is now applicable to the delivery of RHS service hours to an adult waiver participant by any combination of relatives* as defined within the federally approved waiver application. The implementation date of this revision will be March 1, 2012.

*Using Indiana Administrative Code 405 IAC 1-12-11 Allowable costs; services provided by parties related to provider as the foundation, DDRS has established the following definition pertaining to a relative. Related/relative implies any of the following natural, adoptive and/or step relationships, whether by blood or by marriage, inclusive of half and/or in-law status:

1. Aunt (natural, step, adopted)

2. Brother (natural, step, half, adopted, in-law)

3. Child (natural, step, adopted)

4. First cousin (natural, step, adopted)

5. Grandchild (natural, step, adopted)

6. Grandparent (natural, step, adopted)

7. Parent (natural, step, adopted, in-law)

8. Sister (natural, step, half, adopted, in-law)

9. Spouse (husband or wife)

10. Uncle (natural, step, adopted)

Autism Waiver Amendment: The Autism Waiver Amendment submitted to CMS at the end of 2011 mirrors the currently approved DD Waiver Second Amendment.

Supervised Group Living: Level of Care (LOC) Reminder - Level of care (LOC) is re-determined when significant changes occur. For example, changes to medical/ behavior/ supervision needs and findings of W197, W198, W407, etc. from ISDH will cause DDRS to perform a level of care review.

BDDS District Office Restructuring: On November 15, 2011 each District Office underwent a restructuring of its staff to further improve the efficiency and effectiveness of monitoring services of Hoosiers with Intellectual and Developmental Disabilities. A breakdown of the changes at each District Office can be found on the DDRS Announcements web page.

DDRS/BDDS Waiver Data As of December 21, 2011, the unduplicated count of individuals on the waiting list for all three BDDS’ Waivers is 19,613, eighty-five percent (85%) of whom are currently receiving other services through programs or agencies including First Steps, Medicaid, Department of Education, Department of Child Services, etc. The table below indicates the current numbers related to waitlist, targeted individuals, and those currently being served on each waiver.

Over the calendar year 2011, First Steps, with the support of stakeholders, made great strides to meet programmatic and financial obligations. Staff and contractors worked diligently to implement program changes, while delivering quality services to young children. First Steps also implemented changes to insurance billing, allowing First Steps to bill carriers a monthly fee for early intervention services. For covered plans, it is expected that this type of billing will result in additional revenue and ease the billing process.

DDRS Quarterly Update January 2012

Guide to the 2012 Legislative Session

2012-01-04T09:57:00.001-05:00

Indiana's 2012 Legislative Session

Welcome to the 6th edition of FV Indiana's Guide to the Legislative Session. This year brings a "short session" with the session that begins today, January 4, 2012 ending no later than March 14, 2012. This year the General Assembly will take a short break February 2^nd -7^th, because the Super Bowl held in Indianapolis will limit access to hotel rooms for out of town legislators. This session provides many opportunities for families to be involved, share your experience, and build relationships with legislators that will impact current and future decisions. This guide is intended to be a reference issue; in it you will find information on how a bill becomes a law, definitions and translations of acronyms, and information on the House and Senate leadership. We encourage you to contact your legislator, make the effort to introduce yourself, share your perspective and continue to build a relationship. Watch FV Indiana and other sources for action alerts as the session progresses. If you have information about the session to share please contact fv.indiana@gmail.com

Hot Topics for 2012

Family Voices, as a member of Indiana’s Early Childhood Comprehensive System, Sunny Start, was involved in the creation of the 2011, State of the Young Hoosier Child Report. This report outlines key issues facing Indiana children and families. You can view the full report and county data sheets online at: http://www.in.gov/isdh/25192.htm. We encourage you to share this report with your Representatives, as a conversation starter about the issues that impact your family.

Medicaid Waivers

The 2011 session tasked DDRS with reviewing Indiana’s Medicaid Waiver system after the session. During the summer, the Medicaid Oversight Committee has been studying the proposed changes to the Medicaid waiver program originally included in HEA 1001:

~Calculating budget neutrality on an individual basis

~Instituting a family care program

~ Evaluating placement options

~Requiring cost participation for families whose income exceeded 500% of the federal poverty level.

Shane Spotts, Deputy Director of DDRS, will be sharing a draft report outlining potential changes with FSSA Secretary, Michael Gargano, and then it will be released to the public for further comment. Families will need to continue to engage with their legislators about how changes to the Medicaid waiver program would impact them.

How a Bill Becomes Law

Legislation 101

Any legislator in either chamber (House or Senate) can initiate a bill on any matter. The Indiana Constitution provides that all appropriations and revenue-raising bills MUST originate in the House. To introduce a bill, a member files it with the Clerk. The bill is first read to the chamber, at which time each member has a printed copy to study. After the first reading, the bill is assigned to a committee. On the next legislative day, the bill is read for the second time so it will be ready for action when it comes out of the committee. Much of the "work" on a bill comes in the committee. Members of key committees, and particularly committee chairs, can be very influential in modifying the language of a proposed bill and determining whether or not it advances to a vote by the full house. Amendments (changes in the original bill) or even complete bill substitutions may be offered by the committee that studies the bill or by a member from the floor. Sometimes there may be several versions of one bill before the committee can agree. If a committee reports favorably on a bill (a majority of the committee votes for it), it is returned to the full house for a third reading and possibly further debate. Most bills passed out of committee are passed by the full house, but they may be altered, sometimes dramatically, or perhaps not voted upon at all.

Parliamentary maneuvers are sometimes very confusing to spectators, but these rules help to maintain order. Sometimes a bill's opponents can use parliamentary procedures to block a vote on a bill they cannot defeat or amend to their liking. Assuming that a bill survives such parliamentary maneuvers, the vote is taken. If a measure receives a majority of votes, it is passed and sent to the other chamber for consideration and goes through the whole process again. The second chamber can amend the bill, pass it as is or defeat it. If the legislation is amended, it is returned for consideration by the originating chamber. When the House and Senate disagree about amended portions, the presiding officers of each body appoint members to a conference committee which tries to find an acceptable compromise which must be approved in identical form by a majority of both houses. If the second chamber passes the bill without any changes, it is sent to the Governor, who can sign it or veto it. If he signs it, it becomes law; if he vetoes it, the bill "dies" and would have to be reintroduced another year unless the veto is overridden by the legislature, which is rare.

All bills vetoed by the Governor are sent back to the presiding officer of the house of the General Assembly where it originated with a list of reasons for the veto. The Governor's veto can be overridden by two-thirds of the votes in each house. When this happens, the bill becomes law. All bills introduced in the current session, as well as their current status in the process and any amendments, can be viewed on the state website at http://www.in.gov/apps/lsa/session/billwatch/

Take Action!

Advocacy Questions and Answers

How can I take action on legislation?

1. Form a relationship with your Representatives and Senators by calling, emailing, faxing, and scheduling meetings to tell them about how their decisions on the budget and laws affect the quality of life for you and your family.

2. Consider focusing your efforts on key issues such as the Medicaid services, ensuring that any plans for K-12 supports inclusive education practices, or First Steps issues.

How can I contact my state representative or senator?

Every member has an email address and an office phone number at the statehouse. The most effective ways to communicate are by personal contacts: emails, phone calls or face-to-face meetings. Legislators prefer to hear from their own constituents directly and may not pay attention to mass emails or form letters, especially from people outside their districts. Many legislators even invite constituents with concerns to contact them at home or via cell phone. Information about legislators is available on the state website at http://www.in.gov/apps/sos/legislator/search/

You can mail and phone your legislators at the following:

House of Representatives

Indiana House of Representatives

200 W. Washington Street

Indianapolis, IN 46204-2786

(317) 232-9600

(800) 382-9842

Senate

Indiana State Senate

200 W. Washington Street

Indianapolis, IN 46204-2785

(317) 232-9400

(800) 382-9467

TDD Telephone Numbers

TDD (317) 232-0404

TDD (800) 548-9517

The Governor

The Honorable Mitch Daniels

Office of the Governor

Statehouse

Indianapolis, Indiana 46204-2797

(317)232-4567

How do I contact other state agencies?

The State of Indiana website is found at: www.in.gov and contains links to all state as well as many federal and local web resources. Many State Agencies and programs have email newsletters that you can sign up for on their Website; these are a great way to get up to date information about the agency.

When is the General Assembly in session?

The 2012 General Assembly convened on Jan. 4th and is scheduled to end no later than March 14th.

Stay Informed

Groups that provide legislative updates and Action Alerts

Family Voices Indiana

www.fvindiana.org

http://fvindiana.blogspot.com

The Arc of Indiana

http://www.arcind.org/legislative_information_page.htm

Information on the Arc's legislative agenda and general legislative information including link to sign up for action alerts.

Indiana Government

http://www.in.gov/apps/lsa/session/billwatch/billinfo?year=2011&session=1&request=all

Session information including Bill Watch (information on bills, votes, resolutions, etc.).

Indiana General Assembly

http://www.ai.org/legislative/index.html

Indiana General Assembly website.

Indiana PTA

http://www.indianapta.org/LegAlert.html

State and national legislative information from Indiana PTA.

Indiana DOE

http://www.doe.in.gov/puttingstudentsfirst/

Legislative agenda by the Indiana Department of Education.

Glossary

Become familiar with these commonly used acronyms

Appropriation: a specific amount of money that is intended for use by a specific state program

FSSA: Family and Social Services Administration (in charge of Medicaid & First Steps)

DD: Developmental Disabilities

DOE: Department of Education

FY: Fiscal Year

HB: House Bill

HR: House Resolution

SB: Senate Bill

Input on 911 accessibility

2012-01-03T11:41:00.003-05:00

Family Voices Indiana shares the following opportunity for you to share your voice about 911 accessibility.

The Department of Justice is looking for your comments on making 911 more accessible and wants information on how individuals with disabilities use technology such as text, video, realtime texting, SMS, IM and email.

The following is the podcast on Proposed regulations regarding equal access to 911 for individuals with disabilities. The podcast is provided in voice and American Sign Language (ASL)

Commentary can be provided by visiting www.regulations.gov and searching for DOJ-CRT-2010-0007 or go to www.ada.gov.

Update on proposed Medicaid waiver changes

2012-01-02T19:49:00.001-05:00

FV Indiana knows that Medicaid waivers are very important to many Hoosier families. We appreciate that our members have been very involved in sharing your input about potential changes to the waiver system: both to your elected officials, and via community meetings with Julia Holloway (former DRRS director). As a reminder, the Medicaid Oversight Committee has been studying the proposed changes to the Medicaid waiver program originally included in HEA 1001:

~Calculating budget neutrality on an individual basis
~Instituting a family care program
~ Evaluating placement options
~Requiring cost participation for families whose income exceeded 500% of the federal poverty level.

Shane Spotts, Deputy Director of DDRS, will be sharing a draft report outlining potential changes with FSSA Secretary, Michael Gargano, and then it will be released to the public for further comment. Family Voices Indiana looks forward to working with FSSA, and other advocacy organizations, to keep you up-to-date about proposed changes and how you can best share your voice.

The Arc of Indiana public policy agenda

2011-12-28T13:57:00.001-05:00

Family Voices shares public policy agendas from other agencies so families can be more educated about issues that might affect children with special health care needs and/or disabilities. We will also publish our annual legislative guide soon.

If you are interested in attending a meeting and learning more, consider applying for the F2FHIC Family Leadership Development Fund.

The embedded document is the 2012 Arc of Indiana public policy agenda. Each year The Arc of Indiana's Governmental Affairs Committee develops a public policy agenda to guide The Arc's efforts to make a difference in the lives of people with intellectual and other developmental disabilities and their families.We encourage you to read it and direct any comments/concerns to The Arc of Indiana.

2012 Public Policy Agenda

Please help us help others.......

2011-12-28T10:40:00.003-05:00

Many mothers-to-be read What to Expect when You’re Expecting in the months leading up to their baby’s birth. But for some, they receive the unexpected. Their baby is born months too early, or with a cleft palate, or with cerebral palsy. These mothers aren’t sure how they are going to pay the mounting bills; they aren't sure where to turn for help; they feel all alone, like no one understands….

That’s when Family Voices Indiana can help. The family to family health information center is staffed with families who have walked this same path; families who have children with similar needs; families who are trained to help other families who need resources and support.

Your tax-deductible donation to Family Voices Indiana can help us reach the approximately 300,000 children with special health care needs in our state. You can make a difference in the life of a family who is embracing the unexpected and is creating the best possible life for their child.

You can learn more about Family Voices Indiana, and make an online donation here.

If you’d prefer, you can mail your donation to

Family Voices Indiana
4060 W 400 S
Lebanon IN 46052

You can also help by sharing our website and contact information (info@fvindiana.org 317 944 8982) with others who might be seeking assistance.

Thank you for your support.

TSA announces launch of helpline for travelers with disabilities/medical needs

2011-12-23T19:12:00.001-05:00

The holidays are a time of year many people travel. Family Voices Indiana shares with its members that The Transportation Security Administration (TSA) has posted the following press release announcing TSA Cares.....

WASHINGTON – The Transportation Security Administration (TSA) announced the launch of TSA Cares today, a new helpline number designed to assist travelers with disabilities and medical conditions, prior to getting to the airport. Travelers may call TSA Cares toll free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.

“TSA Cares provides passengers with disabilities and medical needs another resource to use before they fly, so they know what to expect when going through the screening process,” said TSA Administrator John Pistole. “This additional level of personal communication helps ensure that even those who do not travel often are aware of our screening policies before they arrive at the airport.”

Since its inception, TSA has provided information to all travelers through its TSA Contact Center and Customer Service Managers in airports nationwide. TSA Cares will serve as an additional, dedicated resource for passengers with disabilities, medical conditions or other circumstances or their loved ones who want to prepare for the screening process prior to flying.

When a passenger with a disability or medical condition calls TSA Cares, a representative will provide assistance, either with information about screening that is relevant to the passenger’s specific disability or medical condition, or the passenger may be referred to disability experts at TSA. TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager located at the airport when necessary.

Every person and item must be screened before entering the secure area of an airport and the manner in which the screening is conducted will depend on the passenger’s abilities and any specific equipment brought to the security checkpoint.

TSA strives to provide the highest level of security while ensuring that all passengers are treated with dignity and respect. The agency works regularly with a broad coalition of disability and medical condition advocacy groups to help understand their needs and adapt screening procedures accordingly. TSA holds quarterly meetings with this coalition to inform them about current training and screening procedures used in airports. TSA recently hosted a teleconference with members of these groups to announce the long-standing plans to implement TSA Cares for travelers and inform them of the upcoming launch.

All travelers may ask to speak to a TSA supervisor if questions about screening procedures arise while at the security checkpoint.

The hours of operation for the TSA Cares helpline are Monday through Friday 9 a.m. – 9 p.m. EST, excluding federal holidays. After hours, travelers can find information about traveling with disabilities and medical needs on TSA’s website. To learn more click here.

All travelers can contact TSA using Talk To TSA, a web-based tool that allows passengers to reach out to an airport Customer Service Manager directly, and the TSA Contact Center, 1-866-289-9673 and TSA-ContactCenter@dhs.gov, where travelers can ask questions, provide suggestions and file complaints.

Mental Health America Indiana public policy meeting notes

2011-12-22T17:23:00.002-05:00

A member of Family Voices Indiana attended the Mental Health America of Indiana public policy meeting and provided us with the following notes. We encourage our members to learn more, and to read the official 2011 legislative agenda at the MHAI website

As we learn of other public policy agendas from other agencies, we will share those. If you are interested in attending a meeting and learning more, consider applying for the F2FHIC Family Leadership Development Fund.

Mental Health of Indiana

Public Policy Committee meeting notes

December 13, 2011

Carla Gaff-Clark welcomed everyone in attendance and introductions were made.

Steve McCaffrey reviewed the public policy committee process. A handout was included which discussed the committee’s purpose, membership and process of the committee.

Preliminary draft no. 3305, currently Senate Bill 24, was briefly discussed. The synopsis explained that the mental health and addiction advisory council and the mental health and addiction planning and advisory council will consolidate and add members to form one body required by federal law. Some irrelevant language regarding the Dawn Project was removed. This bill will be added to the public policy agenda.

Preliminary draft no. 3481, the Probation Improvement Fund, was discussed. Steve McCaffrey report that the Criminal Code Commission and the Mental Health Commission met on November 17, 2011. The topic was concerning the harsh sentences rendered to drug offenders, which sometimes, exceeded those given to more violent offenders. The Commission may explore offering rehabilitative and addiction services to those non-violent drug offenders to reduce prison overcrowding.

Preliminary draft no. 3309, currently the social host law, was discussed. Adults who provide liquor to minors will receive a stricter punishment.

The American Cancer Society may bring the pain management issue to the forefront. Currently, it is classified as a D felony if certain prescriptions are given to addicts. There is a provision in federal law which provides exceptions.

Senator Becker may address the AARP and long term care in nursing homes.

Dual diagnosis will be monitored. There was discussion that there are not consistent places to treat people with dual diagnoses. DD diagnosis and behavioral health provider agencies do not typically provide all the services needed to these patients. Universities may need to be pulled into the conversation to discuss making changes to their curriculum.

Senator Grooms may soon address specialty tier drugs. There is a cap on a percentage of specialty tier drugs. Rylin Rodgers is involved in the discussions. This issue is not a preliminary draft yet, but it may be coming up soon.

Senator Zoeller may address the veterans’ courts. Veterans will go through veteran courts for adjudication and not regular courts. Judge Collins is involved in the discussions.

Discussions may soon arise concerning mandatory drug testing for TANF recipients. A failed test could result in loss of benefits. There was concern regarding who will pay for addiction treatment?

The American Amnesty bill proposes that children can drop intoxicated friends off at hospital emergency rooms without repercussions.

The committee will continue to monitor SB 20, Sunday sales bill (dangerous alcoholic beverages).

The amicus brief in support of BeiBeiShuai was discussed. She had an interlocutory appeal but remains in jail. Ms. Shuai is the woman who tried to commit suicide by ingesting rat poisoning which resulted in the death of her unborn child.

The committee made the following changes to the 2012 MHAI public policy agenda. The issue of increasing the alcohol tax will be removed. The issue of guardianship services for indigent patients will be added back to the agenda as a priority 3. No effort will be made to enhance guardianship and no additional resources will be used. The American Amnesty bill will be added back to the agenda as a priority 2. Monitoring on this issue will continue. The issue of dual diagnosis will be added to the agenda as a priority 1. The issue of arrest and conviction admissions will be removed from the agenda but monitored.

DDRS policy comment period

2011-12-15T14:51:00.003-05:00

Family Voices encourages its members to be involved in public policy at all different levels. This announcement from DDRS requests public input on proposed policies.....this policy refers to a sanctioning committee: "It is the policy of the Division of Disability and Rehabilitative Services (DDRS) to establish a Sanctioning Committee to review and respond to providers demonstrating significant or sustained performance deficits, as related to Indiana Code, Title 460 of Indiana Administrative Code, and DDRS policies and procedures. This policy does not apply to supervised group living providers."

The Division of Disability and Rehabilitative Services (DDRS) has made a commitment to transparency and public input in the policy development process. As a result, all new policies and policy updates will be posted online for public review and comment. The public comment period will last 30 business days from the date of posting, after which all policies will be removed from the page, reviewed based on the public input, finalized and posted onto the DDRS policy page.

The following policies will be posted on DDRS Draft Policies for Public Comment page, on Dec. 14, 2011 and will be available for review until Jan. 13, 2012:

Sanctioning Committee

If you have any questions please e-mail DDRSpolicies@fssa.IN.gov.

Featured resource for December newsletter: Medical Homes

2011-12-15T13:10:00.003-05:00

We will be introducing the health information specialists for the family to family health information center at Family Voices Indiana over the next few newsletters. Their biographies will also be included on our website. Every contractor at our center is a parent of a child(ren) with special healthcare needs and/or disabilities. We have personal experience navigating the systems and services in Indiana. We look forward to learning more about your families as well.

Cyndi Johnson is our HIS for the Bloomington/Monroe County area, and is a bit of a "hats" person, in that she tends to wear quite a few! She is delighted to have recently donned a new one--Health Information Specialist--for Family Voices of Indiana. She has also had the privilege of serving for the last 2 years wearing a not-unrelated hat for The Arc of Indiana as a Family Advocate, helping people navigate the maze of disability services. In addition, as an Advanced Signing Time Instructor, she wears a "teacher cap" several times each week leading "Play-N-Sign" classes around Bloomington.

Sometimes she exchanges her "work hat" for a volunteer one, serving in the education ministry at First Presbyterian Church, as a board member for the local Down syndrome group and Citizen Advocacy of South Central Indiana, and as chairperson for the local First Steps council.

But the most important hat that she wears is one that is often stained and a bit crooked thanks to the little fingers of her 3 children, Aidan (age 5, with high-functioning autism and ADHD), Rebecca (age 3 with Down syndrome), and Leah (age 8 months with a serious case of the "happies"). And she would be remiss without a tip of her hat(s) to her husband, Kaj, who is a professor at IU and a wonderfully supportive companion and father. Together, they enjoy exploring all that Bloomington has to offer, especially the Wonderlab, Farmer's Market, city parks, and the music and arts scene.

And finally, she'd like to say "hats off" to Family Voices, which is meeting a huge need in Indiana by connecting families and amplifying their voice at this critical point in the history of the disability movement. She looks forward to being a part of it!

Kerry Bonney is our HIS for the Seymour/Jackson County area. She describes her role as an advocate as one that she has prepared for all of her life. From her work in the healthcare field for eighteen years to caring for her son with multiple disabilities, she brings her experiences to share with others in hopes that they will be educated and empowered to successfully campaign for the needs of their children.

Kerry resides with her husband, Paul, in Seymour, and is mom to Lanea, a student at the University of Indianapolis, and Evan. Kerry worked as a Family Advocate with The Arc Network for several years and volunteered as a board member for The Arc of Jackson County. She was recently elected president of The Arc of Jackson County.

A medical home is the working relationship between a child’s family and a physician’s practice that supports both excellent health care and family satisfaction. It includes good communication at office visits, between office visits and regarding visits to other specialists as well as oral health, health education, family support and anything else important to a child’s overall health.

Many of the elements of a medical home are dependent on the doctor’s willingness to create an environment where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally competent.

However, families can improve parent/professional partnerships by maintaining an ongoing record of their child's care, services, providers, and notes. A care notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family.

You can find more information about care notebooks here. You can also find Indiana's version, The Wellness Passport, here.

A Family Voices Indiana health information specialist can help you if you need assistance or further explanation. Please call us at 317 944 8982. We also have additional information on our website.

A Sunny Start sheet explaining Medical Homes is embedded below.

If you'd like to sign up for our monthly newsletter, you can do so here.

FS_MedicalHome (1)

Research study opportunities

2011-12-08T19:42:00.000-05:00

Family Voices Indiana shares these opportunities with its members. We do not endorse or recommend any program or facility. We are simply sharing information for families to make the best decisions about opportunities for their children.

Research Study for Children with Attention Deficit/Hyperactivity Disorder

Investigators at IU School of Medicine, Riley Hospital, are conducting a research study of an investigational medication for children, age 6-12, with Attention Deficit/Hyperactivity Disorder & Impulsive Aggression. Study involves approximately 11 visits and lasts up to10 weeks. Participants receive study procedures, mental health evaluations, and study medication or placebo at no charge. Call a member of Dr. David Dunn's research staff at 317-944-1128 or email kidpsych@iupui.edu for more information.

________________________________________

Research Study for Children and Adolescents with Generalized Anxiety Disorder

Investigators at IU School of Medicine, Riley Hospital, are conducting a research study of an investigational medication for children and adolescents, age 7-17, with Generalized Anxiety Disorder. Study involves approximately 14 visits and lasts up to 31 weeks. Participants receive study procedures, mental health evaluations, and medication or placebo at no charge. Call a member of Dr. David Dunn's research staff at 317-944-1128 or email kidpsych@iupui.edu for more information.

Limiting the Limits: An Affordable Care Act Updat

2011-12-06T22:17:00.001-05:00

By Emily McKinley, Health Information Specialist

The Affordable Care Act (ACA) continues to unfold provisions meant to ensure all Americans have adequate health coverage. Two provisions of the act are aimed at increasing the coverage provided by insurers while limiting out-of-pocket expenses to families. The first such provision eliminated lifetime limits insofar as insurance payments for essential benefits are concerned. The second provision introduced a phased implementation eliminating annual insurance payment limits for essential benefits.

Lifetime dollar limits for essential benefits were eliminated for coverage years beginning on or after September 23, 2010. This provision of the ACA applies to all insurance policies, regardless of whether they are employer-sponsored plans or individual insurance plans.

Also in 2010, the ACA commenced a phased implementation of the elimination of annual dollar limits. This implementation takes a stepwise approach for all job-related and individual plans purchased after March 23, 2010. Individual plans purchased before that date may be “grandfathered” and may not have the same provisions insofar as annual dollar limits are concerned. Consumers who purchased individual plans before March 23, 2010, are advised to check with their insurer to determine whether their plan adheres to these new benefit provisions. The provision regarding annual dollar limits regulates insurance payments for essential benefits.

Annual dollar limits paid by insurance plans will gradually be eliminated in the following manner. For coverage years beginning September 23, 2010 through September 22, 2011, annual limits were increased to no less than $750,000 per coverage year. For coverage years beginning September 23, 2011 through September 22, 2012, annual limits must meet or exceed $1.25 million per year. Plan years beginning September 23, 2012 through December 31, 2013, will carry annual limits no less than $2 million per year. Finally, for plan years beginning on or after January 1, 2014, annual dollar limits will no longer be legal.

All insurance and health care coverage plans will be able to maintain both lifetime and annual dollar limits for benefits not deemed essential by the Department of Health and Human Services (HHS). While a more specific definition is currently being drafted by the HHS, the ACA defines essential benefits to “include at least the following general categories and the items and services covered within the categories: ambulatory patient services; emergency services; hospitalization; maternity and newborn care; mental health and substance use disorder services, including behavioral health treatment; prescription drugs; rehabilitative and habilitative services and devices; laboratory services; preventive and wellness services and chronic disease management; and pediatric services, including oral and vision care.''

Once HHS releases the essential benefits definition draft, a public comment period will allow individuals, families, professionals, and others the opportunity to provide feedback and voice concern regarding the definition of such benefits. As always, Family Voices will strive to keep the families we serve informed of any new information pertaining to the ACA, essential benefits, public comment periods and other opportunities for advocacy.

For more information about the Affordable Care Act, please visit: www.healthcare.gov.

To view press releases regarding the ACA, please visit: http://www.hhs.gov/news/index.html.

To learn more about how these and other policy changes affect you, please contact Family Voices at info@fvindiana.org.

Congressional Briefings Highlight the Role of Medicaid in Health Coverage for Children from Diverse Population

2011-11-30T16:36:00.003-05:00

From left to right: Mark Wietecha, Nat’l Assoc. of Children’s Hospitals; Dr. O. Marion Burton, Immediate Past President, American Academy of Pediatrics; Joan Alker, Co-Director, Georgetown University Center for Children and Families; Dianne Malley, Mother of Carissa Malley, a child with special health care needs; and Carissa Malley, front and center.

"This is a story of Medicaid working. For us, Medicaid covered services that our private insurance didn't, and that are essential for Carissa's health."

Dianne Malley with her daughter Carissa whose special health care needs are cared for by Medicaid, presenting at a Congressional briefing on the role of Medicaid in children’s health care, Nov 29, 2011

Washington, D.C., November 30, 2011: On Tuesday, November 29, 2011 two briefings were held for Congress, one in the Senate and one at the Capitol, to highlight the importance of the Medicaid program in serving diverse populations of children. The briefings were sponsored by a collaboration of health care organizations that serve children and families, including the American Academy of Pediatrics, National Family Voices, the March of Dimes, Georgetown University Health Policy Institute Center for Children and Families, and the National Association of Children’s Hospitals. Over 100 people were in attendance at the Senate briefing, and the briefing at the Capitol was also full.

Panelists included:

· O. Marion Burton, MD, FAAP, Immediate Past President of the American Academy of Pediatrics;

· Joan Alker, Co-Director, Georgetown University Center for Children and Families; and

· Dianne and Carissa Malley, Parent and Child with Special Health Care Needs.

The panel was moderated by Mark Wietecha of the National Association of Children’s Hospitals.

Although children make up more than half of all Medicaid enrollees, they account for less than a quarter of all Medicaid spending. In addition, while Medicaid functions as a critical safety-net for the increasing number of children living in poverty today, it also protects families from bankruptcy when they have a child with extensive medical needs, such as a premature newborn or a child with a serious illness or disability. Chronic conditions such as these force thousands of families to the brink of financial solvency each year and without Medicaid, it is likely that either their child would go without the care that they need or the family would be left destitute.

As an example, Dianne Malley noted:

“Our pharmacist has a son with special health care needs who is on Medicaid, which has kept his family from being homeless.”

The briefing explored the importance of Medicaid for the various populations of children, pregnant women, and their families who must rely on this program for their health and well-being. The speakers also discussed opportunities for Congress to protect this vital program during these times of financial austerity.

Dr. Marion Burton, immediate past president of the American Academy of Pediatrics, who now practices in South Carolina, commented:

“If we're going to reduce debt burden we need to raise healthy kids who will live long productive lives…. I used to see 1-2 families a month who lost insurance due to lost jobs. I now see 1-2 families a week…. In my practice, 40% of the kids I care for are on Medicaid…. Medicaid invests in kids' health from the ground up through essential screenings, diagnosis & treatment.”

Dr. Joan Alker, Co-Director of the Georgetown University Center for Children and Families (CCF), noted that six states, Arizona, California, Florida, Georgia, New York, and Texas, account for more than half of all uninsured kids. CCF has just released a report on Children’s Health Insurance Coverage in the United States from 2008 – 2010. See http://thehill.com/blogs/healthwatch/medicaid/195865-report-kids-coverage-varies-widely-by-state. This report documents the importance of Medicaid in filling in the gaps in children’s health care coverage. It states:

Despite the rise in both unemployment and child poverty over the past few years, the uninsured rate for children nationally has declined from 9.3 percent to 8.0 percent. The success of Medicaid and CHIP [The Children’s Health Insurance Program] in reducing the number of uninsured children despite the weak economy is a rare piece of good news….

Dianne Malley summed up the conversation at the briefing by saying:

“I can honestly tell you we would not be standing here today without Medicaid. Medicaid has saved us from bankruptcy."

*****

For more information please contact:
Melanie Rubin, Director of Communications, National Family Voices, www.familyvoices.org, 1-888-835-5669, mrubin@familyvoices.org

Indiana requests waiver of key provisions of No Child Left Behind

2011-11-29T17:34:00.002-05:00

Family Voices shares this information regarding Indiana’s request for a waiver of key provisions of No Child Left Behind (NCLB). We encourage our members to become better educated on this topic and advocate as needed. We will continue to share information on the process as it becomes available.

The U.S. Department of Education invited each State educational agency (SEA) to request flexibility on behalf of itself, its local educational agencies, and schools, in order to better focus on improving student learning and increasing the quality of instruction. This voluntary opportunity provides educators and State and local leaders with flexibility regarding specific requirements of the No Child Left Behind Act of 2001 (NCLB) in exchange for rigorous and comprehensive State-developed plans designed to improve educational outcomes for all students, close achievement gaps, increase equity, and improve the quality of instruction. You can read more in the embedded FAQ.

Eleven states have formally submitted requests to the Department of Education for waivers of key provisions of No Child Left Behind (Elementary and Secondary Education Act) under the Administration's "ESEA flexibility" plan. The waiver requests must be peer-reviewed by a panel of experts, and the first round of the review process begins in December. A list of the peer reviewers and the waiver requests submitted by the first eleven states (CO, FL, GA, IN, KY, MA, MN, NJ, NM, OK, TN) can be found at http://www.ed.gov/esea/flexibility.

The Advocacy Institute and NDSS have created a guide to assist parents in reviewing a state’s waiver request. We encourage families of children with special health care needs/disabilities to become familiar with how this waiver could impact NCLB in Indiana.

http://www.advocacyinstitute.org/blog/?page_id=69

Answering Public Questions

Maureen Greer, Distinguished Leader

2011-11-29T13:36:00.003-05:00

FV Indiana is excited to celebrate Maureen Greer, the 2011 Indiana Governor's Council for People Disabilities Distinguished Leader. The commitment that Maureen Greer has shown to families raising children with disabilities and special health care needs in Indiana has been extraordinary. We are on the cusp of seeing the first generation of Indiana First Steps graduates reach adulthood, bring with them the wave of change sparked by the community based early interventions services First Steps provided. Maureen’s legacy and impact are not limited to Hoosier families touched by First Steps. Instead, it includes; the family centered care provided by hundreds of physicians whose training Maureen impacted at Methodist Hospital, the countless families touched by the number of initiatives Maureen has worked on under the umbrella of Emerald Consulting and most recently the greater discussion and awareness of disability issues within President Obama’s campaign where Maureen served as a member of the disability policy committee. Maureen is a founding Board Member of Family Voices Indiana.
Perhaps what is most remarkable about Maureen’s impact is her ceaseless dedication to family support, family partnership, and family leadership. Maureen, building on her own experiences as a parent recognized the tremendous skills, knowledge and passion that families raising children with disabilities bring and has continually sought out ways to support families. Maureen has continually modeled and supported the understanding that systems, services and communities are strengthened through the involvement of families. Maureen Greer exemplifies what it means to be an “Distinguished Leaders” for people with disabilities and their families. FV Indiana is thrilled to celebrate Maureen's many contributions to Hoosier Families.

Happy Thanksgiving!

2011-11-23T13:31:00.001-05:00

This Thanksgiving, Family Voices Indiana is thankful.......

Thankful for our board and director who volunteer their time to support our work

Thankful for our families and partner agencies who connect families who need our help

Thankful for our family leaders who juggle the needs of their own children with special health care needs to support the needs of others

Thankful for donors who support our efforts

Won’t you consider a tax-deductible donation to let us know you’re thankful, too?

Family Voices Indiana

4060 W 400 S

Lebanon IN 46052

Happy Thanksgiving~ from our family to yours………

Weighing the Options for Children’s Health Care and Medicaid: First Do No Harm

2011-11-23T12:16:00.002-05:00

FV Indiana appreciates our members' commitment to sharing with policymakers why Medicaid Matters. As Congress faces difficult budget challenges in the coming weeks, we are thrilled to share with you an additional way to share your voice. National Family Voices together with the American Academy of Pediatrics, March of Dimes, The National Association of Children's Hospitals and MANY others is hosting a briefing at noon on Tuesday, November 29th for Members of Congress and their staff on Medicaid and role that it plays in supporting various populations of children including children with special health care needs. The briefing will take place in the Russell Senate Office Building Room 325.

You can use this briefing as an opportunity to connect with your congressional delegation, please call and email the offices of Senator Lugar, Senator Coats and your Congressman between now and Monday November 28th to urge them to attend. During your contact you should share how important Medicaid is to your family and families like yours! Hearing directly from families is critical for our delegation.

INVITE Medicaid Briefing House Nov 29

New family leaders at Family Voices

2011-11-22T21:03:00.002-05:00

Family Voices Indiana is the local affiliate of National Family Voices. One of the founding purposes of Family Voices was to assist veteran parents to help other families raising their children with special health care needs. Experienced families listen and answer new families’ questions about a new diagnosis, help them find an accommodating dentist, or assist in negotiations with insurance companies. Family Voices helps other families improve, or learn more about: First Steps; Special Education; Medicaid; Medicaid Waivers; Respite; Vocational Rehabilitation; Community Accessibility; Health Care Funding; Health Care Services and many other things.

As the family to family health information center for the state, we continue that purpose by contracting family members with children with special health care needs as health information specialists to assist other families. We have recently contracted four new family leaders to provide support and information. You will learn more about them in upcoming months, but here's some general information to help you get to know them:

Brian Replogle and his son live in Elkhart.

Traci Kurmay has two children and lives in Plainfield.

Michelle Green lives in Indianapolis and has four children.

Kerry Bonney has two children and lives in Seymour.

We wish Debbie Pedersen all the best as she leaves us to focus on her growing family.......

If you need assistance with health care financing or other resources, or if you're seeking leadership opportunities, please feel free to contact us at 317 944 8982
or email our Project Coordinator, Jennifer Akers at jennifer@fvindiana.org

DDRS bulletin: BDDS office restructuring

2011-11-16T15:07:00.001-05:00

The Bureau of Developmental Disabilities Services (BDDS) provides services for individuals with developmental disabilities that enable them to live as independently as possible in their communities. BDDS assists individuals in receiving community supports and residential services using a person-centered plan to help determine which services are needed and who can best provide them. BDDS also monitors the quality of care and the facilities of those who are approved to provide these services in Indiana.

Family Voices Indiana is embedding the letter from DDRS regarding restructuring of services so families are better informed regarding services available through BDDS.

DDRS Update BDDS District Office Restructuring

DDRS bulletin: Objective Based Allocation update year 2

2011-11-16T12:57:00.001-05:00

Family Voices Indiana shares this information with its members to ensure they can make the best decisions for their families.

The Objective Based Allocation (OBA) is the method used by the state to determine the level of supports an individual needs in order to live in a community setting. The OBA is determined by combining the Overall ALGO (determined by the ICAP and ICAP addendum), Age, Employment, and Living Arrangement. It is used to determine allocations/budgets for those on the DD and Autism waivers.

DDRS recently issued the following announcement regarding the second round of OBA and what individuals should expect. Individuals should be able to ask their IPMG case manager for clarification on any issues or concerns.

We have embedded the letter from DDRS

Ddrs Oba Update Year 2

Ntl Center for Medical Home Implementation survey

2011-11-16T12:41:00.000-05:00

Family Voices Indiana shares this opportunity for you to share any experiences you have had with the medical home model.

Tell NCMHI Your Medical Home Stories!

How have you been impacted by the medical home approach to care? Through the medical home model, a pediatrician and the entire practice team provide patient- and family-centered care through a trusting, collaborative, working partnership with families, respecting their diversity, and recognizing that they are the constant in a child’s life.

The National Center for Medical Home Implementation (NCMHI) is gathering information from pediatric clinicians, families, and other medical home stakeholders about their experiences related to the value of the medical home and how it plays out in real life. The information the NCMHI is seeking will be captured in the form of testimonials and stories; quotes will be excerpted and utilized in NCMHI marketing and educational materials to portray the real-life influence that the medical home has had on communities, practices, patients and their families.

Please complete the NCMHI survey at https://www.surveymonkey.com/s/NZ6MT6G.

You can learn more about medical homes on our website, www.fvindiana.org or at http://www.medicalhomeinfo.org/

Featured program for November newsletter: First Steps

2011-11-15T15:59:00.001-05:00

We will be introducing the health information specialists for the family to family health information center at Family Voices Indiana over the next few months. Their biographies will also be included on our website at www.fvindiana.org. Every contractor at our center is a parent of a child(ren) with special healthcare needs and/or disabilities. We have personal experience navigating the systems and services in Indiana. We look forward to learning more about your families as well.

Lizbeth Curet-Nava is one of our HIS for the Indianapolis area and currently resides in Mccordsville, IN with her husband Gilberto of 10 years and her two year old twins Carmen and Cameron. She’s originally from San Juan, Puerto Rico and grew up as a Military brat. She worked for eight and a half years as a Prenatal Health Educator and the last five years with Children's Bureau in Supervised visitation, Foster parent trainer, and Adoption Champion. Her heart is to help others and Family Voices is a place where currently she’s able to do just that!

Heather Dane is one of our HIS for the Indianapolis area. Since her son, Joseph, was born in 2004, Heather has attended numerous workshops and conferences in an effort to become an effective advocate for her children. Joseph was born with a rare brain disorder resulting in mulitple disabilities and special health care needs. Her daughter, Mikayla, was born premature in 2010 and also had a stroke in utero. Heather has an Associate of Science degree in Human Services with a Mental Health Specialty and will complete her Bachelor of Science in Business Administration degree with a Marketing Specialty in the summer of 2012.

Heather worked as a Family Advocate for The Arc of Indiana for two years and is excited to be joining the Family Voices Indiana family. Heather strongly believes in and advocates for full inclusion of all persons regardless of ability.

Families who are eligible to participate in Indiana’s First Steps System include those with children ages birth to three years old who:

Are experiencing developmental delays.
Have a diagnosed condition that has a high probability of resulting in a developmental delay.

Families come to First Steps in one of two ways. Most families are referred to their local First Steps program by doctors, hospital staff, or other social service agency caseworkers. Others are “self-referrals,” contacting First Steps directly because they are concerned about apparent delays in their child’s development. You can find your local First Steps office here.

The first thing the First Steps Intake Coordinator can do to help your infant or toddler get help is to schedule an initial assessment and evaluation. This service is paid for by First Steps and brings you together with a team of professionals or multidisciplinary team to identify any developmental delay or disability and recommend early intervention services that may benefit your child.

After the initial assessment and evaluation, it may be determined that your child is eligible and in need of early intervention services. Based upon your concerns, you will discuss what services your child may need, what resources are available to you in your community, what your family’s priorities are, what your family’s resources are and last, but not least, your hopes and dreams for your child.

This information then is written into the Individualized Family Service Plan (IFSP), which is a “road map” or action plan for the services your child and family may receive. It includes your major goals for your child; how progress will be measured; what and where services will be provided; when they will begin and for how long; methods of payment; and transition upon the child’s third birthday.

A Family Voices health information specialist would be happy to help you with accessing First Steps. Feel free to call us at 317 944 8982 or email info@fvindiana.org

If you'd like to sign up for our monthly newsletter, you can do so here.

Embedded below is the Sunny Start sheet with more information.......

FS_FirstSteps (1)

Official letter from FSSA regarding incontinence items

2011-11-13T17:28:00.000-05:00

The letter we included in the post regarding a change in incontinence suppliers came from one of our members who currently uses HPD for her supplies. The following is the official notice from FSSA:

November 1, 2011

Attention: To continue receiving incontinence or ostomy supplies you need to select a new provider by December 9, 2011.

Dear Member,

We are contacting you to tell you about a change in providers of incontinence and ostomy supplies. Our records indicate that you have been getting these supplies from Healthcare Products Delivery, Inc. (HPD). HPD will not be an approved provider after January 31, 2012. This means that you will need to get your supplies through one of the approved providers listed below:

Binson’s Incontinence Program Toll Free Phone Number: 1-888-217-9610

J&B Medical Supply Toll Free Phone Number: 1-866-674-5850

You must call one of the providers listed above prior to December 9, 2011. They will do all the work to assess your needs and assure that you will not have a break in supplies. If you choose, you may continue to have HPD send supplies until January 31, 2012. However, it is important to contact one of the providers above prior to December 9, 2011 so that you do not experience a gap in receiving supplies.

If you are not getting supplies from HPD and already receive supplies from one of the two providers listed above, you do not need to do anything.

We are confident that both of our providers are able to meet the supply needs of all members.

Para obtener una copia de esta carta en español, por favor llame al 1.800.457.4584.

How to get Incontinence Items in Indiana

2011-11-10T16:34:00.003-05:00

The Family to Family Health Information Center at Family Voices Indiana often gets requests from families about incontinence items (diapers, etc). There are two major routes to getting diapers for a child with special health care needs: Medicaid and non-Medicaid (private insurance, etc). Families who receive incontinence items via Medicaid recently received a letter indicating they need to choose a new vendor if they are currently using HDP, Healthcare Products Delivery, for their supplies. We have embedded that letter below.

For families not currently receiving incontinence items, we have developed two fact sheets outlining how to access these supplies via Medicaid and non-Medicaid (private insurance, etc). We have included these fact sheets below and they will be available on our website for future reference.

If you need help acquiring these items for your child, please contact us to be connected to a health information specialist. 317 944 8982 or info@fvindiana.org

We hope you find this information to be valuable.

HDP letter

Incontinence Medicaid FS 10032011

Incontinence Non Medicaid FS 10032011

New Interim Director of DDRS (Division of Disability and Rehabilitative Services)

2011-11-07T16:04:00.001-05:00

Family Voices Indiana wants its members to be aware of changes at the state level. The following is an announcement from DDRS:

FSSA announces new leadership for Division of Disability and Rehabilitative Services

Michael Gargano, secretary, Indiana Family and Social Services Administration (FSSA), has named Douglas Elwell as interim director of FSSA’s Division of Disability and Rehabilitative Services (DDRS), effective December 1, 2011.

Elwell replaces Julia Holloway, who is considering several professional opportunities.

Elwell most recently served as managing principal for Health Management Associates, an independent national research and consulting firm specializing in complex healthcare program and policy issues. Elwell has held previous positions with FSSA including chief financial officer of the Division of Mental Health and Addiction; deputy director of the Office of Medicaid Policy and Planning; and posts with the Division of Family Resources and DDRS. Elwell has also served as chief executive officer of the Health and Hospital Corporation of Marion County.

Pre-Existing Conditions and how the Affordable Care Act Works for You

2011-11-07T10:19:00.002-05:00

By Emily McKinley, Health Information Specialist

With the commencement of the Affordable Care Act (ACA) in 2010, children were granted freedom from pre-existing conditions insofar as health insurance coverage is concerned. Under the law, adults (over 19 years) will enjoy the same coverage beginning in 2014.

The ACA adopted the HIPAA (Health Insurance Portability and Accountability Act of 1995) definition of pre-existing condition, which defines the term “as a limitation or exclusion of benefits relating to a condition based on the fact that the condition was present before the date of enrollment for the coverage, whether or not any medical advice, diagnosis, care, or treatment was recommended or received before that date.” Conditions previously not covered by insurance providers were wide-ranging and included conditions such as cancers, heart disease, asthma, and wide variety of special health care diagnoses.

Previous to the adoption of the ACA, individuals with a pre-existing condition may have been excluded from insurance coverage altogether; forced to accept policy riders that excluded coverage of services used to treat the condition and/or related dysfunction of organs and body systems; received policies with extreme benefit limits; or were forced to pay higher premiums and more out-of-pocket costs than those without pre-existing conditions.

Now, children can receive the full benefits of health insurance. According to www.healthcare.org, “Plans that cover children can no longer exclude, limit, or deny coverage to your child under age 19 solely based on a health problem or disability that your child developed before you applied for coverage.” This provision of the ACA is valid for group sponsored plans and all individual plans issued after March 23, 2010. Individual plans purchased before that date may be “grandfathered” and may not include the same protections for individuals with pre-existing conditions.

Furthermore, in 2014, an estimated 129 million Americans under the age of 65 and many senior citizens will be free of pre-existing condition insurance exclusions and rate hikes. At that time, the ACA will usher in the provision that prevents discrimination in the form of exclusions and limits on benefits for adults with pre-existing conditions, and the clause prohibiting health status ratings for the purpose of charging increased premiums will also go into effect.

Until then, adults with pre-existing conditions may look to other sources for insurance coverage. Those sources include the Pre-Existing Condition Insurance Plan ( https://www.pcip.gov/) and Indiana Comprehensive Health Insurance Association (ICHIA) (www.onlinehealthplan.com) coverage. The Pre-Existing Condition Plan should be applied for first as it is less expensive and application to the plan may be a prerequisite for ICHIA coverage. To qualify for the Pre-Existing Condition Insurance Plan, individuals must be a citizen of or lawfully present in the United States, must be uninsured for the previous 6 months, and must have a pre-existing condition or be denied coverage due to a health condition. ICHIA coverage is provided to individuals who are otherwise uninsurable, do not qualify for Medicaid, and are residents of Indiana. Additionally, individuals seeking ICHIA coverage must be federally eligible for coverage, not have access to other health care coverage and/or be eligible for other coverage at a rate higher than the ICHIA premium.

For more about the ACA’s pre-existing condition clauses and other provisions, please visit www.healthcare.gov. To read answers to frequently asked questions regarding enrolling children under 19 with pre-existing conditions in health insurance policies and the protections provided by the ACA, please visit http://cciio.hhs.gov/resources/files/factsheet.html.

If you have questions about how the ACA affects you and/or are interested in speaking with a Health Information Specialist to review insurance and health care financing options with you, please contact Family Voices at 317 944 8982 or info@fvindiana.org.

Public hearings about Healthy Indiana Plan

2011-10-31T19:14:00.000-04:00

Family Voices shares this announcement from FSSA regarding public hearings and opportunity for comment on the renewal submission for Health Indiana Plan.

Under 42 CFR Part 431 and the rules proposed under PART 431 in the September 17, 2010 issue of the Federal Register, 75 FR 56946 – 56961, notice is hereby given that (1) on November 14, 2011 at 1:30 p.m. in conference rooms 1 and 2, and (2) on November 16, 2011 at 1:30 p.m. in conference room 4, at the Indiana Government Center South, Conference Center, 402 West Washington Street, Indianapolis, Indiana, the Family and Social Services Administration will hold a public hearing on a Medicaid 1115 waiver renewal submission to the Centers for Medicare and Medicaid Services to extend the demonstration for the Healthy Indiana Plan (HIP) for calendar years 2013-2015. The current 1115 waiver is set to expire on December 31, 2012. As a result of the recent changes to Medicaid eligibility initiated by the Patient Protection and Affordable Care Act (ACA) and changes authorized by the Indiana General Assembly at I.C. 12-15-44.2, the waiver renewal application includes the authorized modifications to HIP, as well as a request for HIP to serve as the coverage vehicle for newly-eligible individuals under the ACA Medicaid expansion.

The HIP demonstration project was approved in December 2007, and the program began on January 1, 2008. HIP currently covers non-disabled adults between the ages of 19-65 who meet the following qualifying criteria: income less than 200% of federal poverty level (FPL), no access to employer-sponsored insurance, and no health coverage within the six month period prior to application. The program includes a $1,100 deductible and creates Personal Wellness and Responsibility (POWER) accounts to fund the deductible. Individuals are required to make monthly contributions to the POWER account, and the state funds the remainder of the account to ensure the $1,100 deductible can be met. Minimal copayments of $3, $6 or $25 are charged for non-emergent utilization of the emergency room, per the current HIP program. In 2014, the $25 copayment will be eliminated. HIP is delivered via risk-based managed care and provides a basic commercial benefit package once medical costs exceed $1,100. Additionally, $500 in first dollar preventive benefits is provided at no cost to the individual.

There are seven program goals in the proposed 1115 waiver application: (1) reduce the number of uninsured low-income Hoosiers, (2) reduce barriers and improve statewide access to health care services for low-income Hoosiers, (3) promote value-based decision making and personal health responsibility, (4) promote primary prevention, (5) prevent chronic disease progression with secondary prevention, (6) provide appropriate and quality-based health care services, and (7) assure State fiscal responsibility and efficient management of the program. HIP will be evaluated based on progress towards these goals.

HIP currently covers approximately 41,000 individuals. The purpose of this 1115 waiver renewal is to continue HIP for three years, the maximum allowable time period, to use HIP to cover the individuals newly eligible for Medicaid in 2014, and to make other ACA-related changes. Changes to the program in this waiver extension, authorized in I.C. 12-15-44.2, include:

A requirement for enrollees to make a minimum contribution to their POWER Account of $160 annually (but guarantees that individuals will not pay more than 5% of their income towards health costs).
An allowance for not-for-profits to make up to 75% of a member’s required contribution to the POWER Account and authorization for health plans to contribute to the POWER Account to incentivize positive health habits. Currently, employers can make up to 50% of an individual’s contribution; this remains in place with the addition of the aforementioned provisions.
Changes HIP eligibility levels to align with the ACA expansion limit of 133% of federal poverty level (FPL) starting on January 1, 2014. The current eligibility threshold is 200% FPL.

In the first three years of the 1115 demonstration project, HIP covered 77,466 individuals. Current enrollment for the program is approximately 41,000 individuals. With waiver approval it is anticipated that, beginning in 2014 with the ACA provisions taking effect, a total of 192,000 parents and 164,000 adults will be enrolled in HIP. Changes to the budget neutrality agreement have been made to reflect the ACA changes. Per the memorandum included in this waiver application, “1115 Waiver – Renewal Budget Neutrality Filing,” expected expenditures are $2.3B, $3.9B and $4.2B (state and federal) in 2013, 2014 and 2015 respectively. The expected savings, respectively, via the waiver for each of those years, are $150.1M, $487.5M, and $538.0M (state and federal).

The state will identify individuals under 21 years of age who qualify for Early and Periodic Screening, Diagnosis and Treatment (EPSDT) services and assure that EPSDT services will be provided to those individuals who qualify. In addition, if an individual is recognized as part of a Tribal Nation, the State assures that required services will be provided to qualified individuals. The methods and standards for payment are consistent with the current program: not less than (1) the federal Medicare reimbursement rate for the services provided or (2) a rate of 130% of the Medicaid reimbursement rate for a service that does not have a Medicare reimbursement rate.

Copies of the HIP waiver renewal documents are now on file at the Indiana Family & Social Services Administration, Office of the General Counsel, 402 W. Washington Street, Room 451, Indianapolis, Indiana 46204 and are open for public inspection. The documents may also be viewed at www.in.gov/activecalendar/ by selecting the date(s) of the public hearing. Written comments may be sent to the aforementioned address to the attention of Barbara Nardi or to barbara.nardi@fssa.in.gov through the date of the second hearing on November 16, 2011.

Contact Congress Today!

2011-10-26T10:19:00.003-04:00

We need your help in spreading the word about possible cuts to women, children, and families!
The Association of Maternal & Child Health Programs, the National WIC Association, and the National Family Planning and Reproductive Health Association invite you to join us in an unprecedented National Mobilization for Women, Children and Families on October 26. Our goal is to flood Capitol Hill with a unified message opposing MCH and women’s health program cuts.

FV Indiana recognizes that cuts to maternal and child health programs will impact our members, we encourage you join this effort and share your voice, Indiana’s congressional delegation (Senator Coats, Senator Lugar and your Congressman) needs to hear from you. In the next few weeks, Congress will be considering additional cuts to critical discretionary health programs for women, children and families that could exceed $1 billion in 2012 alone. Elected officials need to hear a clear message that these cuts are unacceptable.

Share this simple message:
you oppose any efforts cut core programs for women, children and families, including Title V, WIC and Title X.

Other key points to share include:
Women and children should not be at the forefront of any discussion to reduce the federal deficit. We urge you oppose any efforts to cut core programs for women, children and families, including Title V, WIC and Title X and instead take a balanced approach that does not start with cuts to programs for women and children.
These programs provide the foundation for efforts to improve the health of women and children in Indiana. Further cuts will devastate state and local programs serving pregnant women, babies, children and children with special health care needs.

Ask if the the senator/congressman/congresswoman will support our cause!

1. Call:

·Your Congressman (To find out who your Congressman is members is, visit here.)·Senator Lugar
·And Senator Coats

Dial (202) 224-3121 for the Capitol switchboard

2. After you call, send a follow-up e-mail or fax. There's a template here: http://salsa3.salsalabs.com/o/50133/p/dia/action/public/?action_KEY=6742

3. After you call and send a follow-up e-mail or fax, share this webpage and our alerts with your own friends, family and professional networks and associations!

4. Please share your experience with us, we would love to hear from families who are making calls and sending emails, please send us a short email fv.indiana@gmail.com letting us know who you contact!

DDRS Policy Revisions

2011-10-24T15:53:00.001-04:00

Family Voices encourages its members to be involved in public policy at all different levels. This announcement from DDRS requests public input on proposed policies......

The Division of Disability and Rehabilitative Services (DDRS) has made a commitment to

transparency and public input in the policy development process. As a result, all new policies

and policy updates will be posted online for public review and comment. The public comment

period will last 30 business days from the date of posting, after which all policies will be

removed from the page, reviewed based on the public input, finalized and posted onto the

DDRS policy page.

The following policies will be posted on DDRS Draft Policies for Public Comment page, on

October 24, 2011 and will be available for review until November 24, 2011:

Mandatory Components of an Investigation

Incident Investigation Template

If you have any questions please e-mail DDRSpolicies@fssa.IN.gov.

Family Voices Indiana is hiring family leaders

2011-10-21T17:26:00.000-04:00

Family Voices Indiana

Seeking Family Leaders

to serve as

Family Leadership Specialists

If you are a parent of a child with a disability, with knowledge of health care financing and services and systems in Indiana, Family Voices of Indiana wants and needs YOU!

The Family Leadership Project will fill the information needs of families while developing family leaders to provide a strong family voice. Leadership specialists will be supporting family leaders as partners in all levels of these systems to allow families to better navigate and even influence the process.

Now accepting applications from Family Leaders to support this project as contractors working up to 32 hours a month from your community

please apply by November 4th

Responsibilities:

•Provide information, assistance and support around leadership development, system management and family/professional partnerships to families raising children with special health care needs and/or disabilities

•Contribute to the FV Indiana electronic information network to ensure access to timely and accurate information and resources for families, particularly around systems engagement

•Report data related to the work of the FV Indiana Family Leadership Project

Requirements:

•Must be the parent of a child with special health care needs

•Knowledge of Family Leadership

•Knowledge of services and systems in Indiana

•Bilingual preferred

If you are interested in receiving more information and/or an application packet, please contact:

Jennifer Akers, Project Coordinator

317 944 8982

Jennifer@fvindiana.org

Mark Your Calendars: National Mobilization for Women, Children and Families on Oct. 26

2011-10-20T17:31:00.002-04:00

Family Voices Indiana wants to alert its members to important advocacy that needs to take place Oct 26....

In the next few weeks, Congress will be making budget decisions that will affect funding for critical public health efforts for years to come. These decisions could threaten the very existence of some public health programs, and those serving women, children and families are highly vulnerable.

The Association of Maternal & Child Health Programs, the National WIC Association, and the National Family Planning and Reproductive Health Association invite you to join us in an unprecedented National Mobilization for Women, Children and Families on October 26. Our goal is to flood Capitol Hill with a unified message opposing MCH and women’s health program cuts.

We will be sharing this simple message: we oppose any efforts cut core programs for women, children and families, including Title V, WIC and Title X.

Title V remains the only Federal program that focuses solely on improving the health of all mothers and children.

Title V funds support programs for children with special health needs to facilitate the development of family-centered, community-based, coordinated systems of care

Title V makes a special effort to build community capacity to deliver such enabling services as care coordination, transportation, home visiting, and nutrition counsel-ing, which complement and help ensure the success of State Medicaid and SCHIP medical assistance programs.

Title V-supported programs provide gap-filling prenatal health services 2 million women and primary and preventive health care to more than 17 million children, including almost 1 million children with special health needs.

WIC provides Federal grants to States for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age five who are found to be at nutritional risk.

We will be getting additional information and will post that as soon as it becomes available. It is imperative that we protect these services for our children.

Exciting News: Family Leadership at FV Indiana and our NEW website!

2011-10-18T17:05:00.000-04:00

Family Voices Indiana is excited to announce that the Indiana State Department of Health (ISDH), Maternal and Child Health funding of our Family Leadership Project will support leadership development, family engagement and partnership throughout Indiana.

Families at all stages of the journey of raising children with disabilities and special health care needs encounter a complex maze of systems of services as they seek care and support for their children. These systems are changing rapidly, with new policies and programs, new procedures for enrollment and re-determination, changes in eligibility requirements, program coverage and much more. Developing and supporting family leaders as partners in all levels of these systems allows families to better navigate and even influence the process.

FV Indiana, in partnership with the ISDH, believes families have much to offer in strengthening these systems as they bring valuable insights that can only come from families who actually access these systems. It is the mission of FV Indiana to fill the information needs of families while developing family leaders to provide a strong family voice.

In partnership with the IUPUI school of Informatics, FV Indiana will be developing a web-based Family Leadership Development online portfolio and competency-based training experience that will enhance the development of family leaders in Indiana.

The outcome of this project is a strong cadre of grassroots parent leaders knowledgeable about health care access, resources, services and advocacy strategies.

We’re also excited to announce the FVI website is now LIVE! Come visit us at www.fvindiana.org

You can also find us at Facebook, Twitter and on our blog. Please join us in adding your voice to ours….together, we can make a difference for families raising children with special health care needs and/or disabilities.

Survey on Rehabilitative and Habilitative Services

2011-10-17T19:34:00.002-04:00

Access to assistive devices, technologies, and related services is critical for individuals with disabilities and chronic conditions of all ages. For both children and adults with disabilities, assistive devices and technologies can lead to greater health, participation, independence, productivity, and integration in the home, in the classroom, in the workplace and in the community.

Family Voices Indiana often hears from families who are struggling to get therapies and equipment covered by private health insurance. We are sharing this survey with you so you can provide feedback to the ITEM Coalition.

The ITEM Coalition is devoted to raising awareness and building support for policies that will enhance access to assistive devices, technologies and related services for people with disabilities and chronic conditions. The Coalition is consumer-led and has over seventy member organizations—including a diverse set of disability organizations, aging organizations, other consumer groups, labor organizations, voluntary health associations, and non-profit provider associations.

Survey on Rehabilitative and Habilitative Services

The ITEM Coalition is continuing to collect responses to their survey on private health insurance coverage of rehabilitative and habilitative services and devices. The coalition is collecting information on typical coverage of these services and devices by employer-sponsored health insurance plans. The Coalition is particularly interested in things like physical therapy, occupational therapy, speech therapy, etc. and devices (durable medical equipment) and things like orthotics, prosthetics, or other assistive devices.

If you - or someone you can respond for - has health insurance through an employer and have ever had a disability or chronic condition, please take a moment to respond to this quick 10 question, anonymous survey called “Insurance Coverage of Rehabilitative and Habilitative Devices,” at http://www.surveymonkey.com/s/LY58SY5. The results will help the ITEM coalition members to advocate for comprehensive coverage of these services and devices within the new insurance exchanges.

Featured program for October newsletter: Private Insurance

2011-10-15T12:58:00.003-04:00

We will be introducing the health information specialists for the family to family health information center at Family Voices Indiana over the next few months. Their biographies will also be included on our website at www.fvindiana.org. Every contractor at our center is a mother of a child(ren) with special healthcare needs and/or disabilities. We have personal experience navigating the systems and services in Indiana. We look forward to learning more about your families as well.

Jan Labas is our HIS in the Ft. Wayne/Allen County area, and lives in Fort Wayne with her husband and children. She is passionate about her work with families of special needs children serving Allen and surrounding counties. Having run into walls and road blocks raising her own special needs children she is personally motivated. There is nothing like the love of a parent to fuel the tireless effort needed to find answers for their child. Often it just takes being pointed in the right direction. Jan has worked with: abused and neglected children, children and adults affected by natural disasters, and children and parents in need of educational advocacy. Jan has worked with athletes with physical disabilities in adapted sports and recreation programs.

Jan feels strongly that it isn’t enough to give answers and steer a caregiver to a solution. One must also empower and educate a caregiver to continue on that path.

Debbie Pedersen is one of our HIS for the Indianapolis area, and lives in Indianapolis. She is married and has two children. Her daughter Kaia is four years old and has multiple special needs. Kaia was born with a rare chromosomal syndrome, Phelan-McDermid syndrome, a multicystic, dysplastic kidney, as well as cleft lip/palate, which is not associated with her syndrome. All these medical challenges were detected prenatally. Kaia was also diagnosed with kidney cancer at age two in her functional kidney and went through an intensive treatment regimen of chemotherapy, radiation, and surgery. Kaia is also diagnosed with autism. Debbie and her husband also have a one year old typically developing son, Tor.

Debbie has been an advocate for individuals with disabilities across the lifespan. In high school, she volunteered with Special Olympics. During and following college, she assisted adults with developmental disabilities and worked for a foundation which provided support to those with severe mental illnesses, enabling them to remain in community settings.

She is a passionate breastfeeding supporter, and enjoys traveling, as well as outdoor activities such as canoeing, kayaking, hiking, and mountain biking. Debbie looks forward to serving and getting to know other families with children with special health care needs.

Featured Program: Private Insurance

In today’s complicated health care environment, finding your way through health insurance plans can often seem overwhelming. Many families have access to health insurance as a part of the benefit package their employer offers, while others purchase health insurance on their own. Many of the ‘mandates’ for coverage issued by the state legislature will not always apply equally to group and individual policies. As you seek to ensure your family’s coverage needs are met, it is important to learn about the type of insurance you have, its limits and your related rights.

All types of insurance plans often come with materials that explain benefits, procedures for obtaining authorization of services and addressing appeals and concerns. Families should seek out these materials and be aware of changes. Your employer, human resources department and plan administer are key sources for this type of information. Increasingly, employers are also sharing this type of information electronically.

A Family Voices health info specialist is happy to help you better understand utilizing private insurance including appeals and complaints. Feel free to call us at 317 944 8982 or email info@fvindina.org

To receive our monthly newsletter, subscribe here: http://tinyletter.com/fvindiana

FS_PrivateInsurance (1)

Be Your Own Boss: chronic disease self management

2011-10-14T13:34:00.002-04:00

Center for Youth and Adults with Conditions of Childhood , CYACC, provides interdisciplinary consultation in a health-care setting to specifically address transition and adult life issues regardless of the youth or adult's diagnosis.

CYACC is recruiting patients for sessions of their pilot research program called "Be Your Own Boss" (BYOB). It is a youth and young adult self-management support program developed in collaboration between the Stanford Chronic Disease Self-Management Program (CDSMP) and Alberta Health. The series consists of a six 2.5 hour weekly workshops

Workshops are currently enrolling:

Lafayette at the Morton Community Center: Mondays from 6-8:30pm, October 17 – November 21

Indianapolis at the Acessability Center for Independent Living: Thursdays from 6-8:30pm, October 27 – December 8

Patient criteria:

-Have a chronic disease/condition

-Are between the ages of 13-24 years

-Are fluent in English

-Can participate in a group setting for a series of 6 workshops

See the flyers below for more information…..

BYOB Flyer Lafayette 10.17.11

Flyer Indy 10.27.11

DDRS bulletin: Bureau of Quality Improvement Services

2011-10-13T16:26:00.000-04:00

Family Voices Indiana wants to ensure its members are aware of agencies and programs that affect individuals with special health care needs and/or disabilities. DDRS has posted the following bulletin regarding The Bureau of Quality Improvement Services (BQIS). From DDRS:

BQIS Web Page Updates (http://www.in.gov/fssa/ddrs/2635.htm)

BQIS has added the following two new sections to its web page:

Mortality Data and Recommendations

This section includes data and recommendations from the Mortality Review Committee (MRC). The

MRC reviews deaths of all individuals who received DDRS-funded services and provides

recommendations to mitigate future deaths from occurring due to the same/similar circumstances.

While the mortality data presented on the BQIS webpage may pertain to comorbid conditions that are

not attributable to the cause of death, the risks involved with these conditions warrant providers’

further examination. The expectation is for providers to increase its staff’s awareness of the issues

discussed, identify preventative actions it can take, and to ultimately lead to systemic actions to prevent

future deaths and other negative outcomes for individuals.

http://www.in.gov/fssa/files/MR_Quarterly_Report_10_6_11.pdf

Complaints

Find instructions for how to file a complaint, including BQIS contact information, and key information to

include when reporting a complaint. http://www.in.gov/fssa/ddrs/2635.htm

You can read the entire announcement here: http://www.in.gov/fssa/ddrs/3350.htm

Indiana Health Insurance Exchange Symposium

2011-10-11T15:09:00.005-04:00

FV Indiana was pleased to participate in Indiana's Health Insurance Exchange Symposium on October 11th. This event brought together policy makers, administrators and advocates to consider how Health Care Exchanges, a key provision of the Affordable Care Act, can serve Hoosiers. Indiana is one of four states that has moved forward on Health Care Exchanges via an executive order. We join Hawaii as one of two states considering operating an exchange as a non-profit organization. The October 11th event was hosted by Indiana's Healthcare Implementation Work Group.
Many members have asked how Health Care Exchanges will impact children with special health care needs and their families. The Symposium highlighted several issues of interest to our members. The funding for states to implement exchanges includes significant support for modernization of data and enrollment systems. Related requirements would ensure seamless enrollment across Medicaid, CHIP and the exchanges, a critical issue for many families who must access multiple systems.

FV Indiana encourages its members to stay connected to the ongoing efforts to decided about, plan for and implement Health Care Exchanges in Indiana. You can learn more by visiting:
Kaiser Health Reform
Say Ahh Blog

Several Indiana Legislators partipated in the symposium, indicating a desire to hear from their constituents. Please share your voice.

The Affordable Care Act: resources and opportunities to share your voice

2011-10-07T15:52:00.004-04:00

Family Voices wishes to help your family stay informed and up-to-date with the progressive
development and provide the newest information regarding the Affordable Care Act (ACA). The gradual implementation of the act is designed in such a way as to stagger the development of programs and services; thus, many provisions of the act are still in development stages. Therefore, it is imperative that families monitor the progress of the implementation and advocate for the needs of their own family as well as all families who will be affected by the legislation.

The first step to effective advocacy is to be informed. The most comprehensive source of information regarding the ACA is www.healthcare.gov. Here, you will find a wealth of information broken down by subject, demographics, states, and other search modifiers. For specific information about the implementation of the act in Indiana, visit the Implementation Center and choose Indiana in the dropdown menu or on the map, or visit this link: http://www.healthcare.gov/center/states/in.html. The Newsroom and Blog menu options are also tools to learn about recent developments that are more specific than those listed on the ACA timeline.

Furthermore, those wishing to learn more about how the ACA impacts Indiana healthcare policies and consumers should visit http://www.in.gov/aca. Here, state-specific policy updates, budget considerations, and data are available to site viewers.

Four federal organizations have been tasked with overseeing the implementation of the provisions and programs of the ACA. Those organizations are: the Center for Consumer Information and Insurance Oversight (CCIIO); Centers for Medicare and Medicaid Innovation; Interagency Working Group on Health Care Quality; and the National Prevention, Health Promotion and Public Health Council. Additionally, Indiana’s Family and Social Services Administration has been charged with the implementation of the act insofar as it relates to Indiana state-sponsored services.

The CCIIO, http://cciio.cms.gov/, is primarily responsible for administration and oversight of provisions related to private insurance. These provisions include: ensuring compliance with new insurance market rules, establishing and assisting state reviews of unreasonable insurance rate increases, overseeing the state-based health insurance exchanges, and administering the Consumer Assistance Program, Pre-Existing Condition Insurance Program, and Early Retiree Reinsurance Program. The CCIIO site hosts a Request of Information or Comments page at http://cciio.cms.gov/resources/comments/index.htm l.
Families are encouraged to check back regularly and use your voice to promote positive change.

The Centers for Medicare and Medicaid Innovation, http://innovations.cms.gov/, is charged with maintaining and revitalizing public health programs, such as Medicare, Medicaid, and the Children’s Health Insurance Program (CHIP). This center focuses on cost and quality improvement measures to sustain and improve these programs. The center encourages you to use your voice by sharing your ideas at http://innovations.cms.gov/partnerships/share-your-ideas/. Ideas for building the center and developing care and payments models are specifically solicited. Here, you are also able to sign up for email updates.

The Interagency Working Group on Health Care Quality, http://www.ahrq.gov/workingforquality/, is a collaboration of officials representing 23 federal agencies, which are tasked with developing health care quality and improvement initiatives. The goal for these agencies is to coordinate federal efforts with the private sector. Comments and questions are not as readily solicited by this group, but they may be submitted here: https://info.ahrq.gov/cgi-bin/ahrq.cfg/php/enduser/ask.php? p_sid=vWNq7Bpk&p_lva=&p_li=&p_accessibility=0&p_redirect=&p_page=1&p_cv=2.95&p_pv=&p_prod s=&p_cats=41%2C95&p_hidden_prods=&cat_lvl1=41&cat_lvl2=95&.

The last of the four federal organizations charged with the implementation of the ACA and development of the provisions therein is the National Prevention, Health Promotion and Public Health Council. This council focuses on developing federal-level prevention, wellness, and health promotion initiatives. The National Prevention Strategy text is available at http://www.healthcare.gov/center/councils/nphpphc/ strategy/report.html.
The council may be contacted by emailing prevention.council@hhs.gov.

In addition to the national programs overseeing the implementation of the ACA, each state is charged with carrying out various provisions of the act. To that end, local advocacy is essential as provisions will affect state-sponsored and monitored programs as well as possible legislation, state budgets, and state and local taxes. The Indiana Family and Social Services Administration is charged with the statewide implementation of the act. To provide feedback about the act and, specifically, changes occurring in Indiana, family advocates are encouraged to submit questions, concerns and testimonials to feedback@nationalhealthcare.in.gov.

As always, Family Voices will endeavor to provide our audience with the latest updates to health care services and reform and will advocate on behalf of all families of CYSHCN. As numbers increase the strength and force of our voice, we hope you will join us in sharing your family’s voice.

by Emily McKinley, health information specialist

DD commission report: Arc waiting list task force recommendations

2011-10-06T18:11:00.001-04:00

Family Voices encourages its members to stay up-to-date on issues that affect children with special health care needs and/or disabilities. As part of the budget bill, FSSA presented a series of possible changes to the DD waiver system:

Sec. 4. (a) Before July 1, 2012, the division shall report orally and in writing to the commission for review of a plan to reduce the aggregate and per capita cost of the waiver by implementing changes to the waiver that may include the following:

(1) Calculating budget neutrality on an individual rather than an aggregate basis

(2) Instituting a family care program to provide recipients with another option for receiving services

(3) Evaluating the current system to determine whether a group home or a waiver home is the most appropriate use of resources for placement of the individual

(4) Evaluating alternative placements for high cost individuals to ensure individuals are served in the most integrated setting appropriate to the individual's needs and within the resources available to the state

(5) Migrating individuals from the waiver to a redesigned waiver that provides options to individuals for receiving services and supports appropriate to meet the individual's needs and that are cost effective and high quality and focus on social and health outcomes

(6) Requiring cost participation by a recipient whose family income exceeds five hundred percent (500%) of the federal income poverty level, factoring in medical expenses and personal care needs expenses of the recipient

(b) After the division makes the report required under subsection (a), the division may consult with the office and take any action necessary to carry out the requirements of this section, including applying to the federal Department of Health and Human Services for approval to amend the waiver.

There is currently a group meeting weekly with DDRS to look at the proposals in HEA 1001. That group includes The Arc of Indiana, INARF, IPMG, INABC.

The Arc presented its waiting list task force recommendations at yesterday's DD commission: http://www.arcind.org/upload/assets/pdfs/public%20policy/the_arc_of_indiana_waiting_list_task_force_report_%209.2011.pdf

We encourage our members to become educated about the issues and to contact The Arc and their legislators to share the family voice regarding proposed changes that may affect our children.

Policy change to Aged&Disabled and TBI waivers

2011-10-06T10:11:00.003-04:00

Family Voices Indiana has received information from the Division of Aging regarding the Aged and Disabled/Traumatic Brain Injury Waivers. The official letter from the division is embedded below. When referring to level of care (LOC), the following definition from the Consumer’s Guide to the Waiver outlines what eligibility must be met to meet LOC for these waivers. It is important to note the LOC is determined differently depending on the child’s age:

Nursing Facility Level of Care – For the purposes of Level of Care eligibility for the Aged and Disabled or the Traumatic Brain Injury Waivers, a person must have either unstable complex medical condition which require direct assistance from others for the following conditions: decubitus ulcers, comatose condition, or management of severe pain; OR direct assistance from others for medical equipment, such as ventilator, suctioning, tube feeding, central intravenous access (I.V.); OR direct assistance for special routines or prescribed treatments from others such as tracheotomy, acute rehabilitation conditions, administration of continuous oxygen; OR medical observation and physician assessment due to a changing, unstable physical condition; OR other substantial medical conditions. The initial Level of Care determination is made by the Area Agency on Aging. LOC is required in order for the person to be admitted into a nursing facility or initially start Waiver services.

If you think your child might be eligible for these waivers, you should call your local Area Agency on Aging. Additional info on these waivers was featured in our recent blog post.

Feel free to contact us at 317 944 8982 or info@fvindiana.org if you need assistance.

Medical Waivers

Today is National Child Health Day: Helping Children Lead Healthy Lives

2011-10-02T19:10:00.003-04:00

Monday, October 3, 2011 is National Child Health Day. This year’s theme is Helping Children Lead Healthy Lives. A HRSA website was created at http://mchb.hrsa.gov/childhealthday/ to feature important resources that assist families in finding health care services. Resources featured on the website include the 311 Prenatal Hotline, Insure Kids Now, Family-to-Family Health Information Centers, Text 4 Baby, Find a Health Center Locator and the Maternal and Child Health Program.

For Family-to-Family Health Information Centers (F2F HICs), Child Health Day has particular significance. F2F HICs provide information, training, technical assistance, and peer support to families of children with special health care needs, representing over 8.8 million families or 1 in 5 households in the U.S.

About Family-to-Family Health Information Centers from Peggy Curran on Vimeo.

Family to Family Health Information Centers (F2FHIC)

In our state, Family Voices Indiana is the family to family health information center.

F2F HICs are uniquely able to help families with children and youth with special health care needs and/or disabilities because they are staffed by family members who have first-hand experience navigating the maze of health care services and programs for children and youth with special heath care needs. F2F health information specialists understand the issues that families face and are aptly qualified to help families make informed decisions.

All F2F HICs provide:

Assistance to families and professionals in navigating health care systems;
Information, education, training, support and referral services;
Outreach to underserved / underrepresented populations
Guidance on health programs and policy; and
Collaboration with other F2F HICs, family groups, and professionals in efforts to improve services for CSHCN.

Call us at 317 944 8982 for assistance. Or email info@fvindiana.org. Our website is www.fvindiana.org

We’re also on Facebook and Twitter…….

311 Prenatal Hotline

Every year nearly one million American women deliver babies without receiving adequate medical attention. Babies born to mothers who received no prenatal care are three times more likely to be born at low birth weight, and five times more likely to die, than those whose mothers received prenatal care. If you are pregnant, programs in Indiana can help you have a healthy baby. These programs offer medical care, support and advice for pregnant women, information about health insurance and other services you and your baby may need. There are many free or low-cost services for pregnant women and their babies. For more information, call 1-800-311-BABY (1-800-311-2229). For information in Spanish, call 1-800-504-7081.

Insure Kids Now

Medicaid and CHIP provide no-cost or low-cost health coverage for eligible children in Indiana. Even if your children have been turned down in the past or you don’t know if they qualify, you may be able to get health coverage for them now. Medicaid and CHIP provide health coverage for children so that they can get routine check-ups, immunizations and dental care to keep them healthy. They can also get doctor visits, prescription medications and hospital care when they’re sick, and much more.

Call 1-877 KIDS NOW (1-877-543-7669) to talk to someone, or call Family Voices Indiana at 317 944 8982

If you need help locating a provider for medical or dental care, Family Voices can help with that too.

Health Centers

Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Health centers provide

checkups when you're well
treatment when you're sick
complete care when you're pregnant
immunizations and checkups for your children
dental care and prescription drugs for your family
mental health and substance abuse care if you need it

You can use the locator at http://findahealthcenter.hrsa.gov/Search_HCC.aspx, or call us Family Voices at 317 944 8982

Text 4 Baby

To help more pregnant women and new moms get information about caring for their health and giving their babies the best possible start in life, the National Healthy Mothers, Healthy Babies Coalition (HMHB) launched text4baby, the first free health text messaging service in the U.S.Text4baby supports moms by providing accurate, text-length health information and resources in a format that is personal and timely, using a channel she knows and uses

Text the word baby to 511411 (envia bebe al 511411) for free weekly text messages that will support you through pregnancy and the first year of baby's life. Topics include prenatal care, labor signs and symptoms, nutrition, breastfeeding, safety, infant and child development, and more.

Family Voices......keeping families at the center of children's health care.......Let us know how we can help!

DD commission mtg and other upcoming commission dates

2011-10-01T14:20:00.004-04:00

The Developmental Disability Commission will meet this Wed, Oct 5 at 1p

State House, 200 W. Washington St.,Room 431 Indianapolis, Indiana

MEETING AGENDA

(1) Call to Order

(2) Follow Up on Written Answers to Questions from First Meeting

(3) Presentation on Music Therapy, Ms. Casey DePriest

(4) Presentation from Indiana Self Advocates, Ms. Melody Cooper,

President

(5) Presentation from Indiana Institute on Disability and Community -

Indiana University Center for excellence in Developmental Disabilities, Ms.

Teresa Gross, Community Living and Careers Director

(6) Medicaid Waiver Waitlist Task Force, Mr. John Dickerson, ARC of

Indiana, and Ms. Erika Steuterman, Chairperson of the Task Force

(7) Other Business

(8) Adjournment

(The meeting will be broadcast over the Internet for those unable to attend. Please

visit http://media.ihets.org/senate431 to watch the Webcast.)

other upcoming interim committee meetings include: Health Finance Commission 10/18 10a Senate Chambers, Select Joint Commission on Medicaid Oversight 10/18 2p Senate Chambers,

10/24 Commission on Autism 1p Rm 431, 10/25 Commission on Mental Health 1p Senate Chambers, 10/26 DD Commission 1:30p Senate Chambers

You can find a complete calendar here: http://www.in.gov/legislative/pdf/INTERIMCAL.PDF

If you would like to apply for the Family Leadership Development Fund to support your participation at any of these meetings, please call 317 944 8982 or email info@fvindiana.org

Indiana Health Insurance Exchange Symposium 10/11-FREE

2011-09-23T14:54:00.001-04:00

Indiana must make key decisions related to health insurance exchanges before 2013. Affordable Insurance Exchanges are designed to make buying health coverage easier and more affordable. Starting in 2014, Exchanges will allow individuals and small businesses to compare health plans, get answers to questions, find out if they are eligible for tax credits for private insurance or health programs like the Children’s Health Insurance Program (CHIP), and enroll in a health plan that meets their needs.

An Exchange can help you:

Look for and compare private health plans
Get answers to questions about your health coverage options
Find out if you’re eligible for health programs or tax credits that make coverage more affordable
Enroll in a health plan that meets your needs

What this means for you:

For individuals and families, the Exchange is a single place where you can enroll in private or public health insurance coverage.
For small employers, the Exchange is a way to level the playing field, where you have better choice of plans and insurers at a lower cost, the way larger employers do now.

For More Information:

The Symposium will feature national experts in the fields of medicine, insurance and health policy to discuss the implications of a health insurance exchange in Indiana.

Click here to register today for the Indiana Health Insurance Exchange Symposium!<http://www.surveymonkey.com/s/FD3LPYL>
Because attendance is FREE, limited seating is available and registration is required.

Who:
Legislators, Policy Makers, Health and Insurance
Industry Professionals, Employers, General Public

When:
Tuesday, October 11, 2011
Lunch: 11:30 AM
Program: 12:30 PM to 5:30 PM

Where:
Indiana Government Center Auditorium
402 W. Washington Street
Indianapolis, IN 46207

Registration deadline is Thursday, October 6th. The agenda is embedded below.

Seating is limited! Click here to register today!<http://www.surveymonkey.com/s/FD3LPYL>

HIX Symposium Agenda

Contact Senator Coats Today about Maternal and Child Health Services

2011-09-21T13:25:00.002-04:00

Family Voices Indiana recognizes that you have been receiving many calls for advocacy and action lately, and we thank you for your efforts. These are challenging times at the state and national level and it is critical that our representatives hear from families about how important the systems and services we interact with are. To support your efforts we share the following critical action alert from our partners at AMCHP and National Family Voices:

At 3:00 p.m. EST today (September 21) the Senate Appropriations Committee is scheduled to vote on a Labor, HHS, Education and Related Agencies Appropriations bill for FY 2012 that includes a $50 million cut to the Title V Maternal and Child Health Services Block Grant. This cut will affect every state and possibly every Title V SPRANS grant. In Indiana the Block Grant support many important programs including the Children's Special Health Care Services program.

Elected officials need to hear from you NOW about the impact of this cut before they vote. Indiana’s Senator Dan Coats is on the Senate Appropriations Committee we urge you to IMMEDIATELY call his office (202-224-5623), ask for Adam Howard, the staff person who handles health appropriations, and share the following message:

• I am deeply concerned that the LHHS appropriations bill begins deficit reduction by targeting Title V MCH programs serving pregnant women, infants and children with special health care needs. It seems highly unfair that a program representing less than one half percent of the entire bill is being asked to shoulder 16% of the total cuts.

• If this cut goes forward hundreds of health professionals will lose their jobs within months. These are people working to protect and improve the health of pregnant women, babies, children, adolescents, and children with special health care needs.

• If the cuts in Title V are made, we ask that you protect programs providing technical assistance to federal grantees working to help children with special health care needs and their families, such as the National Center for Family/Professional Partnerships.

• We ask that the committee reconsider why MCH is being asked to absorb nearly one sixth of this committee’s total budget cut and find a way to share deficit reduction more fairly.

You can also email Adam Howard at:adam_howard@coats.senate.gov

IPAS Critical Barriers survey

2011-09-20T09:57:00.001-04:00

Indiana Protection and Advocacy Services (IPAS) is seeking input from Hoosiers with disabilities, family members and professionals.

Your comments will help identify the major disability rights barriers which people with disabilities face that may interfere with achieving full community integration and independence in Indiana.

This information provided will help IPAS make decisions about how resources and manpower are used to address these barriers during the coming year. Our goal is to obtain input from all 92 Indiana counties. The IPAS Critical Barriers survey takes only a few minutes to complete and can be found at: www.thepollingplace.org. Thank you for your assistance.

To request the poll in an alternative format, or for additional information about the survey, contact Jeffrey Chait by phone: 1-800-825-4733 or e-mail: cwlab@indiana.edu.

_____________________________________________________________________

The Critical Barriers survey is being conducted by the Center for Planning and Policy Studies at the Indiana Institute on Disability and Community.

Family Voices Indiana at the Health Finance Commission mtg

2011-09-15T15:41:00.002-04:00

Family Voices Indiana thanks our partner, American Academy of Pediatrics (AAP), Indiana Chapter, for facilitating the opportunity for Heather Dane to give testimony at yesterday’s Health Finance Commission. Heather, a health information specialist for FV Indiana, did an amazing job sharing how insurance denials impact families raising children with special health care needs. If you would like to share your voice at a future hearing let us know!

Heather's testimony is embedded below

You can find a list of all interim study commission meetings here: http://www.in.gov/legislative/index.htm just click the daily schedule calendar to the right.

We are happy to help you share your story; and the family leadership development fund may provide a stipend for such activities.

Heather Testimony