Friday's Child

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July 3, 2009
"Keep Your Dreams-You Can Make Dreams Come True"

For Nannie Marie Sanchez- "Keep your dreams. Dreams make a difference. You can make dreams come true"- are words she lives by as she makes her mark in the world. Born with Down syndrome to a sixteen-year-old mother convinced by physicians that Nannie would never talk, walk, or to do much for herself, especially as an adult, her biological mother gave her up for adoption to a loving family who was willing to ensure Nannie's success in life.

Nannie attended public school and higher educational systems "that both helped me succeed and threatened to kill my spirit." While most teachers sought to challenge her, others were less encouraging. "I've had teachers who have told me that I can't do things," she says. "But that's not true; it just takes me more time. They laughed at me in high school and said, ''Nannie can't do this, Nannie can't do that.'" Nannie rose above all that and has succeeded in many ways:

a.. A Run for Office: In what might be the nation's first quest for state office by an individual with Down syndrome, Nannie ran for the Democratic nomination for the District 3 State of New Mexico Board of Education seat, representing more than one third of Albuquerque's school district. She said, "I am not running for the novelty of it. I want to change the whole system for people like me." Although she only received 36% of the vote, she regards that as a victory--36% of the voters did not view her disability as a reason not to serve.
b.. International Speaker: Nannie has attended and presented on disability at conferences in Israel, Portugal, Puerto Rico, and all over the United States.
c.. College Placement Trailblazer: Nannie was the first person with Down syndrome to ever pass the placement test a local community college required, after school administrators told her she wasn't qualified to attend. She went on to graduate with a certificate in the Business Administrative Assistant program.
d.. Statewide Fundraiser: She has worked with NM state legislators in getting $155,000 for a training center and a bus for people with disabilities.
e.. A Voice for Disabled New Mexicans: This year she got sponsorship for a new interim committee comprised of four representatives from the House and Senate and two to three advocates to assist legislators in reviewing all disability bills.
f.. Television Host: Nannie hosted her own local television show for five years, addressing issues that affect people with disabilities.
g.. Business Consultant: Nannie currently runs her own consultant business, Dreams of Self, where she consults worldwide on working with individuals with disabilities.
Nannie constantly seeks new challenges and opportunities. She takes pride in who she is and what she has to offer. She doesn't say "I can't," but rather, "how can I do this?"" The impact and inspiration of her advocacy work ripples through the state and the nation.





Congratulations to the New F2F HICs!

The Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) recently announced the awards of Family-to-Family Health Information Center grants to ten new organizations:

a.. Alabama: Family Voices of Alabama
b.. Alaska: Stone Soup Group
c.. Arkansas: Arkansas Disability Coalition
d.. Idaho: Idaho Parents Unlimited
e.. Iowa: University of Iowa - Child Health Specialty Clinics
f.. Kentucky: KY Commission for Children with Special Health Care Needs
g.. Ohio: Family Voices of Ohio
h.. South Carolina: Family Connection of South Carolina
i.. West Virginia: West Virginia Parent Training and Information
j.. Wyoming: Parents Helping Parents of Wyoming


As of June 1, 2009, F2F HICs will be operational in every state and the District of Columbia. F2F HICs assist families of children and youth with special health care needs/disabilities (CYSHCN) with support, information, resources, and training. Family Voices, Inc., as the National Center for Family / Professional Partnerships (NCFPP), provides technical assistance to support these activities. MCHB recently awarded a new 4-year cooperative agreement to Family Voices to continue to provide technical assistance to the F2F HICs throughout the country.

OKLAHOMA: Finding Opportunities To Partner Professional Knowledge With Family Wisdom

The Oklahoma Family Network (OFN) provides another example of statewide efforts encouraging family and professional partnerships. Joni Bruce, OFN Executive Director, described the OFN Council: "The relationship has matured over time. Last year, the family members sat on one side of the room and the professionals on the other. This year, you can't tell the difference between them." They have gotten to know each other-and value their respective contributions.

In 2007, Betsy Anderson and Barbara Popper visited the OFN to provide Family Voices Technical Assistance, and the idea for a statewide conference was developed. The second Joining Forces: Supporting Family and Professional Partnerships Conference was recently held in April.

More than a dozen organizations and government offices from the Down Syndrome Association of Central Oklahoma to the Oklahoma State Department of Health pitched in with everything from food to mileage reimbursement for participants. The conference's top priority was to provide skill building for effective partnerships. Added Joni, "It was amazing to me for the agencies to admit that they need help."

Mentors are key. "We identify family leaders who can mentor others and teach basics like how to dress and act, and then help find positions for them." Conference attendees are asked to identify committees or groups that would benefit from family participation, as well as needed skills or experience.

OFN's efforts are working. Family voices are being heard, respected, and requested, all in an effort to improve the health and well-being of Oklahoma's children.

For more information about the Oklahoma Family Network, go to their website.
Legislative Corner
Family-to-Family Health Information Centers (F2F HICs)

Since the last update, much has happened in the world of health care reform. While there are still many details to be filled in, the five committees of jurisdiction in the House and Senate - the Senate Committee on Health, Education, Labor & Pensions (HELP); Senate Finance Committee; and three House Committees-have all issued either bills or outlines of proposed bills. The FV Policy Team is working to ensure that children with special health care needs (CSHCN) are considered as this legislation is developed.

In a June 18 Family Voices letter, Family Voices expressed support for the bill developed by Senator Edward Kennedy (D-MA), Chairman of the HELP Committee. The letter praises provisions of the bill, including those that would: eliminate pre-existing condition exclusions, benefit caps, and premium disparities based on disability; expand Medicaid eligibility; make insurance more affordable; and establish community-based "navigator" entities to help consumers select the best insurance plans for their families. The letter urges the committee to specifically support the role of F2F HICs to ensure that families of CSHCN obtain needed assistance in securing benefits for their children.

In addition, FV joined a number of other national organizations in signing on to a letter to Chairman Kennedy and Ranking Member Michael Enzi (R-WY) expressing support preserving state mandated health benefits, and for improvements to the proposed "Medical Advisory Council," which would be responsible for developing a federal benefits package under the Kennedy bill.



Health Care Reform

Comprehensive information about health care reform can be found on the website of the Kaiser Family Foundation. (See especially Explaining the Basics of Health Care Reform and Side-by-Side Comparison of Major Health Care Reform Proposals.)

If you have any questions about these or other federal issues, please feel free to contact the Public Policy Team -- Brooke Lehmann and Janis Guerney.


IN THIS ISSUE:


Feature Stories:
a.. "Keep Your Dreams-You Can Make Dreams Come True"
b.. Congratulations to the New F2F HICs!
Family Leadership in the States
a.. OKLAHOMA: Finding Opportunities To Partner Professional Knowledge With Family Wisdom
Legislative Corner:
a.. F2F HIC Appropriation
b.. Health Care Reform
News for You:
a.. New Medical Home Website
b.. New Medical Home Toolkit
c.. Medical Home Teleconference
d.. MCH Knowledge Path Update
e.. 2020 Objectives
f.. Health Disparities report
g.. Understanding Health Care Policy Debate
From Our National Partners
a.. HRTW: Coaching Youth and Families to Move Forward in Health Care Transition-One Small Step at a Time


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News You Can Use




New Medical Home Website
The Center for Medical Home Improvement (CMHI) has a new website, , whose purpose is to "spread awareness of the importance of a medical home, develop supports for primary care physicians to implement a medical home, and align state and national efforts toward the implementation of medical homes everywhere."

New Medical Home Toolkit
The AAP/MCHB/National Center for Medical Home Implementation has developed a new "Building Your Medical Home Toolkit" to help practices assess and improve medical home capacity. The toolkit is organized around care partnership support, clinical care organization, care delivery management, resources and linkages, practice performance measurement, and payment and finance. To view the toolkit, visit their website.

Medical Home Teleconference
The fifth teleconference in the AAP's Medical Home Implementation Series, "Incorporating Family Participation Practices into Your Practice and Project," has been rescheduled for July (date TBA). Family Voices Board of Director Renee Turchi, MD, MPH, FAAP, will be one of the featured speakers. Visit their website for more information.

MCH Knowledge Path Update
This latest Knowledge Path update provides resources for screening, diagnosis, treatment and intervention, communication, vocational challenges, and impact on early life of the autism spectrum disorders. Besure to check out the complete listing of these informative Knowledge Paths.

2020 Objectives
Listen in on July 10, 2009 to the Open Internet Meeting of the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020. There will be no opportunity for oral public comments during this meeting, but written comments are welcome throughout the development process.

Health Disparities report
One of the challenges of health care reform is ensuring that all segments of the population have equal access to quality care. In a new report, HHS Secretary Kathleen Sebelius discusses health disparity issues including higher rates of disease, reduced access to care, and lack of routine care and prevention options for low-income Americans and racial and ethnic minorities.

Understanding Health Care Policy Debate
For information and resources to help understand the health care policy debate, check out the Commonwealth Fund's informative website.

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From Our National Partners:

HRTW

Coaching Youth and Families to Move Forward in Health Care Transition-One Small Step at a Time

Transition in health care may seem like an overwhelming challenge for youth with special health care needs and their families. Think about taking small steps toward transition:

a.. Copy the insurance card for the child or youth to carry and present at the doctor's office. Talk about who pays for health care, and that the youth will someday be the payer.
b.. Have the child or youth co-sign for treatment or surgery. Include the patient in a discussion in understandable terms. If the child or youth cannot sign his or her name, a signature stamp can be made.
c.. Program ICE-In Case of Emergency-into the cell phone contact information. Emergency personnel look for this to make appropriate contact for the individual needing care. Many new phones have ICE already available.
d.. Make a portable medical summary of important medical information such as emergency contact, health care provider information, allergies, etc. Check out "Tools" at www.hrtw.org for a downloadable form.
e.. Develop 5 questions to ask at the next doctor's appointment. Encourage the child or youth to dialogue with the doctor and have a way to record or remember the information.
f.. Learn about medication. If it is difficult to learn names, be sure the child or youth knows what the pill bottle and actual pill look like to ensure correct medication is given.
These are six steps to begin health care transition. Pick ONE today. Before you know it, the child or youth will be well on the way toward transition in health care.



Join the next Healthy and Ready to Work (HRTW) Topical Call on "Ticket to Work: Roles for Public Health and Health Care Providers," July 15, 2009, from 3-4pm EDT. Visit the HRTW website for more information.

CSHCS and the State Budget

Family Voices visited the State House today to check on funding for CSHCS in the proposed budget. On page 69 of the budget, CSHCS is funded at $13,862,070.
The legislature passed the budget this afternoon and avoided a state closure on non essential services. The impact of this funding level is still unclear but Family Voices will follow up with the IDSH on the approved funding levels and share details with you as we get more information on how this may impact CSHCS.

FV Health Care Reform Platform

HEALTH CARE REFORM AND CHILDREN WITH SPECIAL HEALTH CARE NEEDS
Family Voices is a national organization of families with children and youth with special health care needs(CYSHCN). Through our national network, we provide families with tools to make informed decisions, advocate for improved public and private health care policies, build effective partnerships between professionals and families, and serve as a trusted resource on health care.

Family Voices recommends that the following policies be part of national health care reform.
• Benefits must be comprehensive, flexible and continuous to address the unique and special health care needs of these children.
o Medicaid, including Early, Periodic Screening, Diagnosis and Treatment (EPSDT), should be
preserved and strengthened given its unique and critical role in providing high-quality health
care coverage for CYSHCN.
o The Family Opportunity Act (FOA) Medicaid Buy-In program ("wrap around") should be
strengthened by eliminating income limits and utilizing a progressive sliding scale for premiums.
States should be given incentives to establish buy-in programs so that this benefit is available in
every state.
o Pre-existing condition exclusions should be eliminated.
o There should be seamless transition without gaps in coverage and which limit administrative
burden on families when CYSHCN change insurers due to eligibility for Medicaid, changes in
family employment status, etc.
o Benefits must include comprehensive services from pediatric providers based on a child’s
medical needs; decisions regarding medical necessity should be made by pediatric providers.
• Health care must be affordable for families.
o No family should face unlimited or onerous health care costs. Affordability standards must take
into account all out-of-pocket costs (premiums, co-pays, deductibles, coinsurance, costs of
uncovered health care services, etc.)
o Annual and lifetime caps on insurance coverage should be eliminated.
o There should not be premium differences based on health status or utilization of services.
o There should be a progressive sliding scale for premiums and a maximum percent of income that families must pay for care that takes in to account aggregated expenses of all out-of-pocket costs as listed above.
• The health system must be family-centered, community-based, coordinated, and quality- conscious.
o Every child should have a medical home that engages with families to coordinate care.
o Families should have access to clear information about their child’s special health care needs
and how to navigate the health system including community services, new information
technologies such as Health Information Technology (HIT) and health care financing. The
Family-to-Family Health Information Centers provide a model for this kind of cost-effective
family support.
o There should be pediatric quality of care standards that address CYSHCN that are developed and implemented with family input, applied to both Medicaid and other health insurance plans and that are effective in promoting a high-performing health system.
o There should be adequate provider reimbursement in Medicaid and other health care coverage plans to assure adequate access to needed pediatric specialists and other health care providers.

National Family Voices Website
www.familyvoices.org
FV Indiana
http://fvindiana.blogspot.com/

The state budget and programs for those with disabilities

FV Indiana is encouraged by the impact our members and others are having on systems that affect our children.  Many of you have given your input on the proposed eligibility  changes for the Children's Special Health Care Program.  The following update is being distributed by the program:

 

Regarding the possibility of lowering the financial guidelines on July 1st, this statement was received from the CSHCS Director:

"No decisions on eligibility criteria will be made until we receive the final budget."

FV Indiana encourages each of you to continue sharing your perspective with your legislators.  Their budget decisions will be key to the future of this program.  Letters do make a  difference.  Your opinion, added to that of others, does count.  Legislators need to know what their constituents think about budget priorities under consideration.  Your voice does count.   Please continue to contact your legislators to share your perspective on budget priorities during these difficult financial times.

 

Some key points to consider sharing are:

·         Education is a priority for our families just as it is for all Hoosier families.  Local schools will be, and are benefiting, from stimulus dollars to support IDEA (special education).  We hope that the legislators  will support efforts to ensure that those dollars benefit students with disabilities. 

·         Stimulus dollars have also provided critical funding for Medicaid and we support Indiana’s efforts to maintain existing programs and make no cuts to Medicaid. 

·         Proposed funding cuts to the Indiana State Department of Health could adversely impact Indiana’s Children’s Special Health Care program.  We urge the legislators to maintain current eligibility criteria for this critical program

 

A personal email to legislators as they prepare to consider a new state budget is very powerful.  Your email can provide the "face and story" to help legislators understand the importance of these programs.    Please take a few moments to share what state programs and services mean to your family. You can find their contact information at:
http://www.in.gov/apps/sos/legislator/search

 

Special Legislative Session

The Indiana General Assembly will return to the Statehouse this week to resume work on a new state budget.The special legislative session will begin June 11. FV Indiana encourages our members to contact your legislators to share your perspective on budget priorities during these difficult financial times. Some key points to consider sharing are:
• Education is a priority for our families just as it is for all Hoosier families. Local schools will be, and are benefiting, from stimulus dollars to support IDEA (special education). We hope that the legislators will support efforts to ensure that those dollars benefit students with disabilities.
• Stimulus dollars have also provided critical funding for Medicaid and we support Indiana’s efforts to maintain existing programs and make no cuts to Medicaid.
• Proposed funding cuts to the Indiana State Department of Health could adversely impact Indiana’s Children’s Special Health Care program. We urge the legislators to maintain current eligibility criteria for this critical program

A personal email to legislators as they prepare to consider a new state budget is very powerful. Please take a few moments to share what state programs and services mean to your family. You can find their contact information at:
http://www.in.gov/apps/sos/legislator/search

Health Care Reform

FV Indiana knows that many of our members have a strong interest in health care reform. Please see the following opportunity to share your story and input:


This week, President Obama’s weekly address highlights the urgent need for health reform this year. The President said:
Simply put, the status quo is broken. We cannot continue this way. If we do nothing, everyone’s health care will be put in jeopardy. Within a decade, we’ll spend one dollar out of every five we earn on health care – and we’ll keep getting less for our money.
That’s why fixing what’s wrong with our health care system is no longer a luxury we hope to achieve – it’s a necessity we cannot postpone any longer.
You can watch the President’s full address by visiting www.WhiteHouse.gov. After you watch the address, please visit www.HealthReform.gov and share your story about the health care status quo and why you support health reform.
Sincerely,
Jeanne Lambrew
Director, HHS Office of Health Reform

DETERMINATION LETTERS for IDEA

U.S. DEPARTMENT OF EDUCATION
DETERMINATION LETTERS ON STATE IMPLEMENTATION OF IDEA
JUNE 2009


The U.S. Department of Education’s Office of Special Education and Rehabilitative Services released State determinations on implementation of the Individuals with Disabilities Education Act (IDEA) for Part B and Part C for fiscal year 2007. The 2004 Amendments to the IDEA require each State to develop a State Performance Plan (SPP) that evaluates the State’s efforts to implement the requirements and purposes of the IDEA, and describes how the State will improve its implementation. The Part B SPP includes baseline data, measurable and rigorous targets, and improvement activities for 20 indicators such as graduation rate, dropout rate, participation and performance on assessments, meeting evaluation timelines, and ensuring that complaints and hearings are resolved within required timelines. The Part C SPP includes baseline data, measurable and rigorous targets, and improvement activities for 14 indicators such at ensuring positive outcomes for infants and toddlers with disabilities, timely provision of services, meeting evaluation timelines, and provision of services in natural environments.
The IDEA also requires each State to report annually to the Secretary on its performance under the SPP. Specifically, the State must report in its Annual Performance Report, the progress it has made in meeting the measurable and rigorous targets established in its SPP. The Secretary is required to issue annual determination letters to each State on their progress in meeting the requirements of the statute. The determinations are part of the ongoing efforts to improve education for America’s 7 million children with disabilities.
IDEA details four categories for the Secretary’s determination. A state’s determination may be:

 Meets the requirements and purposes of IDEA;
 Needs assistance in implementing the requirements of IDEA;
 Needs intervention in implementing the requirements of IDEA; or
 Needs substantial intervention in implementing the requirements of IDEA.


IDEA identifies specific technical assistance or enforcement actions for States that are not determined to “meet requirements,” that the Department must take under specific circumstances. If a State “needs assistance” for two consecutive years, the Department must take one or more enforcement actions, including among others, requiring the State to receive technical assistance, designating the State as a high-risk grantee, or directing the use of State set-aside funds to the area(s) where the State needs assistance. If a State “needs intervention” for three consecutive years, the Department must require a corrective action plan or compliance agreement, or withhold further payments to the State. Any time a State “needs substantial intervention” the Department must take immediate enforcement action, such as withholding funds or referring the matter to the Department’s inspector general or to the Department of Justice.



Following is each State’s performance in meeting the requirements of IDEA Part B, which serves students with disabilities, ages 3 through 21:

• MEETS REQUIREMENTS—
Alabama, Alaska, Arkansas, Arizona, California, Commonwealth of the Northern Mariana Islands, Connecticut, Hawaii, Idaho, Iowa, Kansas, Maryland, Michigan, Minnesota, Mississippi, Missouri, Montana, North Carolina, North Dakota, New Jersey, Ohio, Oklahoma, Oregon, Republic of Marshall Islands, South Dakota, Utah, Virginia, Washington, Wisconsin and Wyoming

• NEEDS ASSISTANCE—
Delaware, Guam, Pennsylvania, Puerto Rico, Texas, Virgin Islands and Vermont

o NEEDS ASSISTANCE (two consecutive years) —
American Samoa, Federated States of Micronesia, Florida, Georgia, Illinois, Kentucky, Massachusetts, Maine, Nebraska, New Hampshire, Nevada, New Mexico, New York, Palau, South Carolina, Tennessee and West Virginia

• NEEDS INTERVENTION—
Bureau of Indian Education, Louisiana and Rhode Island

o NEEDS INTERVENTION (three consecutive years)—
Colorado, District of Columbia and Indiana

Following is a list of each state’s performance under IDEA Part C, which serves infants and toddlers birth through age 2:

• MEETS REQUIREMENTS—
Alabama, Arkansas, Commonwealth of the Northern Mariana Islands, Connecticut, Delaware, Iowa, Idaho, Illinois, Indiana, Kansas, Maryland, Massachusetts, Minnesota, Missouri, Montana, North Carolina, Nebraska, New Hampshire, New Jersey, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Dakota, West Virginia and Wisconsin

• NEEDS ASSISTANCE—
Alaska, Maine, South Carolina, Tennessee, Texas and Wyoming

o NEEDS ASSISTANCE (two consecutive years)—
American Samoa, Arizona, California, Colorado, Florida, Guam, Hawaii, Louisiana, Michigan, Mississippi, New York, North Dakota, Ohio, Puerto Rico, Utah, Virginia, Virgin Islands, Vermont and Washington

• NEEDS INTERVENTION—
Georgia, Kentucky, New Mexico and Nevada

o NEEDS INTERVENTION (three consecutive years)—
District of Columbia