Wednesday, April 26, 2017

Latest Healthcare Proposal Guts Protections for Pre-Existing Conditions

Republican leaders are not giving up on repealing the Affordable Care Act. Yesterday, media leaked text that modifies the harmful House repeal bill to make it more appealing to conservative Republicans. 
Make no mistake: The proposed changes only make a bad bill worse. 

Take Action: Urge your representative in Congress to oppose any bill that will increase the number of uninsured, decrease federal protections for people with pre-existing conditions, and cut Medicaid. And tell them it’s time to drop harmful campaign to repeal the ACA. 

New proposal takes aim at people with preexisting conditions

The new proposal allows states to seek waivers from enforcing the ACA’s core protections for people with pre-existing conditions for almost any reason a state claims. Under this harmful amendment, states could: 
  • Allow insurers to charge people higher premiums based on pre-existing conditions for a full year if they have a small gap in coverage. States could allow insurers to begin doing this as soon as 2018 for people seeking coverage through a special enrollment period. 
  • Eliminate or weaken the law’s essential health benefits requirement starting for plans sold in 2020. The essential health benefit requirement guarantees coverage for services like mental health care, prescription drugs, and maternity care. 
  • Possibly allow insurers to charge older adults even higher premiums than the original House repeal bill, beginning January 1, 2018. The insurer practice of charging different rates based on age is known as “age rating” and it is not entirely clear what the amendment would do to age rating. The original House repeal bill increased the maximum "age rated" premium for older adults to five times that of younger people. Summaries of this new amendment have said that states could only allow insurers to increase age rating for older adults up to a maximum of five times the premiums of younger people. However, the actual amendment appears to allow states to go beyond this and allow premiums to be even more than five times higher for older people than for younger people. 

To get approval from the federal government for any of the preceding changes, the new amendment does not ask much of states. For example, states that pursue these waivers are not required to guarantee coverage for people with pre-existing conditions at all. 
And states could qualify for these waivers simply by participating in a program that reimburses insurers for expensive claims from high-cost individuals (what Republicans are calling an “invisible high risk pool”). However, such a program offers no guarantee that insurers will actually make coverage affordable to these people with expensive health conditions. 
Worse, under these waivers, there is no limit on how much more insurers could charge people with pre-existing conditions who face a gap in coverage, meaning insurers could effectively price these individuals out of affordable health coverage all together.

Make no mistake, this amendment would return us to the days before the ACA when people with pre-existing conditions were denied affordable and comprehensive health insurance. 

On top of all this, the new amendment prevents states from waiving these protections for health coverage provided to members of Congress and their staff. While Congress is comfortable stripping protections from millions of families, they are simultaneously ensuring that they do not lose any essential health benefits or face higher premiums due to their own health conditions. 
And remember, the new proposal is adding troubling changes to a bill that has been widely criticized for the damage it would cause to our health care system. 

New proposal adds to a repeal bill that is bad for America’s health care

In March, Speaker Ryan gave up on passing the existing version of the American Health Care Act, unable to garner enough votes. Here’s what this disastrous legislation would do:
  • Raise premiums for millions of people in America, especially older and sicker populations
  • Increase the number of people without insurance by 24 million  
  • Effectively eliminate Medicaid expansion and ration future Medicaid care
  • Give $600 billion in tax breaks to the wealthy 
Learn more about the problems with the House bill to repeal the ACA. 

The bottom line? Affordable Care Act repeal would destroy health care

Despite their promises, Republicans in Congress continue to threaten the ACA’s protections for people with pre-existing conditions and its guarantee of affordable coverage. And they continue to put forth proposals that strip coverage from millions and drive up health care costs for millions more. 

originally posted:

Raise Our Voice: Invite 5 Families to join Family Voices Indiana's Network

Family Voices is a grassroots organization serving families of children and youth with special health care needs and the professional who serve them. We are only as strong as the sum of our parts, and we invite you to use your voice and networks to help us raise our voice.

Anytime we have a change in administration at the local, state, or national level, there is a possibility that long standing programs might undergo changes. In these instances, it’s important for families to advocate for their children and the programs that support them.We have seen the power of our collective voice as the American Health Care Act was sent back to the drawing board, and this has been, in part, credited to the overwhelming voice of the American citizenry as concerns for their health care, livelihoods, and families were expressed to Congress. At each step, Family Voices Indiana provided our network with action and advocacy alerts as well as factual information about proposed policy and legislation.

Join with us, linked heart-to-heart and family-to-family, to raise our voice and expand our network to ensure action alerts reach vast audiences. Customize and share the following message to add your 5.
Please join with me in an important effort to advocate for positive programs and policies. Programs that affect the health and livelihood of my family and friends are under consideration for drastic changes, budget cuts, and, even elimination. We must link family-to-family and raise our voice  to influence positive votes and productive change. Family Voices Indiana is my trusted resource for action and advocacy alerts. Join their network by subscribing to your preferred outlet:


CHIP Offers Families With Seriously Ill Kids More Financial Protection Than ACA Plans

By Michelle Andrews Kids with chronic conditions are especially vulnerable to health insurance changes, relying as they often do on specialists and medications that may not be covered if they switch plans. A new study finds that these transitions can leave kids and their families financially vulnerable as well.
The research, which examines the spending impact of shifting chronically-ill kids from the Children’s Health Insurance Program (CHIP) to policies offered on the health law’s marketplaces, found that their families’ out-of-pocket costs would likely rise, in some cases dramatically, following a change to marketplace coverage.

The study comes at a time when health insurance issues are on the front burner in Congress. Republican lawmakers are pushing for fundamental changes to the marketplaces and to the Medicaid program. At the same time, Congress must soon decide whether to extend CHIP when its funding ends in September.

Together the state-federal Medicaid and CHIP programs insure nearly 46 million low-income children in the United States. CHIP covers kids whose family income is low but too high to qualify for Medicaid. The eligibility levels  vary by state. Half of states set the upper income eligibility limit at 255 percent of the federal poverty level or higher — about $52,000 for a family of three.
Both programs provide comprehensive coverage for children with little or no out-of-pocket cost to families.

Since passage of the Affordable Care Act in 2010, some policy analysts have advocated moving children who are enrolled in CHIP into marketplace plans and dismantling the CHIP program. But earlier evaluations found, as did this study, that CHIP coverage was better and cheaper than marketplace coverage, said Joan Alker, executive director of the Georgetown Center for Children and Families.

CHIP is much smaller than Medicaid, with more than 8 million children enrolled, roughly 2 million of whom have one of six chronic health conditions, including asthma, attention deficit hyperactivity disorder, diabetes, epilepsy, mood disorders and developmental disorders such as autism, according to the study, which was published in the April issue of Health Affairs.

Using data compiled from state CHIP programs and marketplace plans for 2016 and health care use data from the federal Medical Expenditure Panel Surveys from 2008 to 2013, researchers simulated the annual out-of-pocket costs for children with these six chronic conditions if they were enrolled in CHIP versus one of the plans sold on the marketplaces operated by the federal government.
The spending differences were stark. For every chronic condition and at every income level, cost sharing was higher for children enrolled in marketplace plans than for those in CHIP.

Take the case of asthma, the most common condition that researchers modeled. For a child with asthma whose family income was between 100 and 150 percent of the federal poverty level, or about $20,000 to $30,000 for a family of three, annual out-of-pocket spending on deductibles and copays would be $284 in a marketplace plan, compared with $27 in CHIP — a difference of $257. At higher incomes, the out-of-pocket spending differences were greater. Families with incomes between 251 and 400 percent of the federal poverty level, or about $51,000 to $81,000 for a family of three, would pay $1,227 out-of-pocket annually if they were enrolled in a marketplace plan but just $84 in the CHIP program — a difference of $1,143.

“The lowest income families were relatively well protected by cost-sharing reductions” in marketplace plans, said Amy Davidoff, a senior research scientist in the Department of Health Policy and Management at the Yale School of Public Health, who is one of the study’s co-authors. Those cost-sharing subsidies, which reduce a plan’s deductible, copayments and coinsurance, are available to marketplace customers with incomes up to 250 percent of the federal poverty level — about $51,000 for three people. These subsidies are the subject of a lawsuit, however, and their fate is unclear.

As family income rises, however, the gap between the out-of-pocket costs for the two different types of coverage increases and becomes quite substantial, Davidoff said. “For these families, it would be huge barrier,” she said.

About 97 percent of children on CHIP belong to families with incomes below 250 percent of the poverty level.

The deductible — the amount that people have to pay on their own before insurance covers most services — was a significant factor in the cost differences. The average deductible in marketplace plans for families with incomes between 251 and 400 percent of poverty was $3,126. None of the CHIP programs for families at that income level had deductibles, the study found.
Noting that CHIP has a history of strong bipartisan support, Alker said she is hopeful that it will be extended. “I think it would be very hard for Congress to let CHIP expire,” she said, “and put those children into the marketplace, when according to their leaders it’s about to fold.”

Please visit to send comments or ideas for future topics for the Insuring Your Health column.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Friday, April 21, 2017

New Efforts to Cut Medicaid and Repeal ACA Emerging in Congress

In that bill, ironically titled American Health Care Act, the Medicaid cap was one of the two main sources of the $839 billion cut in federal Medicaid spending used to offset most of the $999 billion in lost federal revenues resulting from the repeal of the taxes used to pay for the ACA coverage expansions.  In some quarters, repealing the ACA taxes remains a high priority, and Medicaid is still the “go to” source for budget offsets.

Despite the lack of hearings and the frantic time frames during the last go-around—it was almost as though the authors did not want anyone to know what the legislation actually did—we learned a few things about the cap proposal.  It is worth keeping these lessons in mind if a “new and improved” version of “repeal and replace” surfaces in the next few days.
First, the cap has nothing to do with “repeal and replace.”  The ACA provides health insurance coverage to over 20 million Americans through a combination of premium and cost-sharing subsidies in the Marketplaces and expansion of Medicaid to non-disabled, non-elderly adults.  The cap would limit federal spending on both health and long-term care services for 77 million Americans, including 34 million children.

Second, don’t be distracted by the “per capita” part of the “per capita cap.”  That is a wonky policy complexity that has successfully misled many who have tried to understand what the cap is.  Here’s the key point:  the cap is a single number that represents the total amount that the federal government will spend on Medicaid in a state for each year starting in 2020, regardless of the need for services or the costs of care.  That single dollar amount is based on average per capita spending for four different groups—children, elderly, disabled, and other adults—in a base year (2016) multiplied by actual enrollment in each group.  (In Medicaid expansion states, another category—expansion adults—is added). There is no specific amount that states must spend on each group—just an overall limit on the amount the federal government will spend on health care and long-term care services for all of the groups in each year.

Third, the cap can be used by this and future Congresses to dial for dollars.  The dial they will turn is the annual growth factor used for calculating the single cap number that will apply to each state each year.  To get to that single cap amount, the average per capita amount for each group in the base year 2016 is increased each year by an annual growth factor.  The higher the annual growth factor, the lower the federal “savings” resulting from the cap.  (“Savings” is in quotes because the cap doesn’t actually reduce the need for medical or long-term care services, or reduce the cost of those services, or reform the delivery of care to make it more efficient; it just shifts the costs of covering services for 77 million Americans from the federal government to the states and counties).

In its original form, the House bill used as the annual growth factor the medical care component of the consumer price index (CPI-M), which the Congressional Budget Office (CBO) projects CPI-M to be 3.7 percent annually.  (CBO expects federal Medicaid spending to grow at 4.4 percent annually under current law).  As the bill headed for the House floor, it was revised to change the annual growth factor.  The annual growth factor for the elderly and disabled groups was increased to CPI-M plus one percentage point, while the annual growth factor for children, expansion adults, and non-expansion adults remained unchanged at CPI-M.   According to CBO, this change in the growth factor would have the effect of raising the single amount of the cap on federal spending for each state in 2020 and each year after, thereby reducing federal Medicaid “savings” by at least $41 billion over the 2017-2026 period.

In this case, the annual growth factor was increased for two favored groups and left unchanged for three others.  It could just as easily have been left unchanged for the favored groups and reduced to, say, CPI-M minus one for one or more of the unfavored groups (just for “able-bodied” adults, just for kids).  Of course, picking which groups to favor with a plus one or to disfavor with a minus one is entirely optical, since the calculation all sums up to one single number at the end.  But optics matter when Congress is looking for justification for whatever specific Medicaid budget target it wants to achieve at any point in time.
If federal policymakers need “savings” in order to pay for tax cuts or pass a debt ceiling extension or improve Medicare payments to providers, they can simply reduce one or more of the annual growth factors as needed, shifting more Medicaid costs to states.  A percentage point here, a percentage point there, pretty soon you’re talking real money.  And real states.  And real people.

Which brings us to the last lesson: the cap is a cost shift that will leave states with only bad choices.  Here’s how CBO put it:  “With less federal reimbursement for Medicaid, states would need to decide whether to commit more of their own resources to finance the program at current-law levels or whether to reduce spending by cutting payments to health care providers and health plans, eliminating optional services, restricting eligibility for enrollment, or (to the extent feasible) arriving at more efficient methods for delivering services.”

Delivery system reform is hard, takes time, and does not guarantee results.  In contrast, cutting payments to providers and plans, dropping optional services, and restricting enrollment will generate immediate, concrete financial results.  Faced with an annual federal Medicaid spending cap that Congress can dial down as needed to achieve federal budget targets, which pathway are state policymakers likely to follow?  And what are the implications for the nation’s largest health insurer for children?

Isn’t this at least worth a hearing?

originally posted at:

Wednesday, April 19, 2017

Where and How to Find an Applied Behavior Analysis (ABA) Provider or Center

Contributed by Dr. Cathy Pratt, BCBA-D
Director, Indiana Resource Center for Autism

Parents recognizing the importance of early intervention and the research behind ABA, often have questions about locating and choosing specific ABA programs and providers. As the demand has grown, so too has the number of options available. ABA providers and centers are multiplying across the state of Indiana. In some areas of the state, the options are fewer or harder to access. In areas that offer many options, parents often have a difficult time choosing the right center/provider for their child and family. Because these centers/providers use somewhat different approaches and interact with families in different ways, it may be hard to know which center or provider will best meet their needs.
Below are a list of questions that can help guide you in the process of finding a provider or center that best fits your child’s and families’ needs.
  1. Are your staff Board Certified?
    Note: You want to be sure staff providing services have the proper credential. More specific information can be found at the Behavior Analyst Certification Board (
  2. How many BCBAs work in the center/program? How many BCaBAs?
    Note: Does your program follow the BACB Practice Guidelines, related to BCBA supervision recommendations, and caseload size of the team providing services to my child? BACB Guidelines note that oversight of 6-12 clients is the average, with a higher range possible based on circumstances (see page 31 of
  3. How many Registered Behavior Technicians (RBT) work in the center/program?
    Note: Direct ABA treatment is typically provided by a “front line therapist” or RBT under the direction of a BCBA.
  4. Is the treatment 1:1 with the RBT or in a group format? If group, how many learners to one RBT?
  5. What level of oversight is provided by the BCBA? Is the BCBA on the premise at all times? How many hours of direct oversight of the program are provided?
  6. What are the training procedures of the clinic/provider? Is regular and ongoing professional development available to staff?
    Note: The certification board (BACB) has requirements that people obtain ongoing training to maintain certification.
  7. How frequently will the BCBA meet with the parent/caregiver?
  8. Will the BCBA coordinate services with other providers (e.g., Occupational therapists, Speech Language Pathologists) and at what frequency?
  9. What is agency policy for implementing behavior plans? Are restricted interventions (e.g., time-out procedures, restraint, etc.) being used? What is the approval process for behavior plans that have restrictive interventions? Is there an external review process (e.g., advisory board, etc.)?
  10. What policies are in place for preventing abuse? Exploitation? Protecting privacy? Does the center/provider have policies in place? Ask to see relevant policies.
  11. What is toileting or diaper changing policy? If children are showered, what policy is in place to protect your child?
  12. How frequently are parents allowed to observe the child in therapy?
    Note: While an agency/provider may have basic protocols on how to schedule an observation, the ability or inability to easily access your child at any time may be something worth considering. Also, if at any time you notice a procedure with your child that makes you uncomfortable, you have every right to stop the procedure and/or ask for more information about why the procedure is in place, the potential harm and good of the procedure, and about potential alternative procedures.
  13. What data collection methods are used?
    Note: Data collection is a critical component of ABA programs. All providers and centers should be able to regularly provide you data in a format that is understandable. They should explain how to interpret the data. Some professionals become so accustomed to using data that they hand you reams of data that simply don’t make sense to anyone. Providers and staff at centers should be able to summarize data so you can see trends that show if your child is improving or not.
  14. How does your center assess if progress is being made? Can I see examples of how this is done at your center?
    Note: After you have selected a provider or center, ask about their plan and the documentation they will maintain about your child’s progress. Once your child is in a program, you should have regularly scheduled meetings with your child’s BCBA or supervising provider to review progress, make updates to the program, and to provide you with the skills to help maintain and generalize your child’s mastered skills at home or in the community.
  15. Do you provide regular training for family members/parents?
  16. How much will treatment cost?
    Note: ABA providers and centers charge different rates. Costs will vary greatly. Please do not assume more expensive means better services.
  17. What is the practice for billing my insurance?
    Note: Be sure you are aware of possible co-pays, co-insurance, and deductibles.
  18. What other payment options are available (e.g., Medicaid, Children’s Special Health Care Services)?
  19. What is the rate of staff turnover?

There is no ABA magic wand. It takes a lot of work by many people (including you) to help your child reach his or her potential. So be very careful of grandiose promises about unrealistic outcomes. Providers who promise instant cures should be questioned. None of us can say with certainty what a child will be able to do in the future. Most children will make progress when provided with effective intervention and support, but each child will progress at a different pace. Many factors may affect progress. Factors like your child’s health, behavioral challenges, quality of program, and how challenging it is for them to carry over their skills to important settings (like your home or in the community) all influence how quickly progress is made. Any provider or center that promises your child will be “just like a child without ASD” in a few years is making promises they can’t keep.
Our hope is that the information provided in this article will help you think through some issues that may be important as you explore options for your child and family. For other information on this topic, visit our website at (What to Consider When Looking for a Qualified ABA Provider) and (Tips for Choosing a Provider for Applied Behavior Analysis).
Below is a list of agencies and providers across Indiana. The Indiana Resource Center for Autism does not recommend a specific organization or person, and this list is not intended as a critique or endorsement of any individual provider or agency. Again, when contacting those listed below, discuss the cost of services, and the type of services provided. Contact your insurance company to determine coverage for ABA. You can also check the website at to find a BCBA provider in your area.
If you are an ABA provider and you want your organization added to this list, contact Dr. Cathy Pratt, BCBA-D at
If you have evidence that a provider has not acted ethically or professionally, and should not be included on this list, or if you are concerned about the manner in which they have treated your child, please do not hesitate to email Dr. Cathy Pratt, BCBA-D directly with specific concerns at


Little Star Center
3101 North Canterbury Court, Bloomington, IN 47404
Contact: Victoria Blessing-Wade, Family Services Director, 812-650-3032


Little Star Center
12650 Hamilton Crossing Boulevard, Carmel, IN 46032
Contact: Victoria Blessing-Wade, Family Services Director, 317-249-2242


Little Star Center
630 Eastern Boulevard (opening Spring 2017), Clarksville, IN 47129
Contact: Victoria Blessing-Wade, Family Services Director, 317-249-2242

Fort Wayne

Lizbeth A. Anderson MS, BCBA
9419 Silverfox Drive, Fort Wayne, IN 46804
Contact: Liz Anderson, 260-348-7007,


Damar ABA Autism Services
9905 Fall Creek Road, Indianapolis, IN 46256
Contact: Lisa Goldberg,
Damar ABA Autism Services
6067 Decatur Blvd, Indianapolis, IN 46241
Contact: Lisa Goldberg, 
The Indiana Institute for Behavior Analysis
8650 Commerce Park Place, Suite A1, Indianapolis, IN 46268
Contact: Angelica N. Gray , 


Adapt for Life, Center for ABA and Autism
607 North Shore Drive, Jeffersonville, IN 47150
Contact: Samantha Setty, BCBA, 


Little Star Center
3922 Mezzanine Drive, Lafayette, IN 47905
Contact: Victoria Blessing-Wade, Family Services Director, 765-447-3800 Website:


Indiana Behavior Analysis Academy
125 West Taylor, Kokomo, IN 46901
Contact: Lisa Steward, 765-419-0411lisas@indianabaa.comWebsite:


Innovations In Learning 
8200 Georgia Street, Merrillville, IN 46410
Contact: Maryann Furmento, 219-791-1400contact@innil.netWebsite:


Lighthouse Autism Center
525 Park Place Circle, Mishawaka, IN 46545
Contact: Pat Sweeney, Family Outreach Coordinator, 574-387-4313
Lighthouse Autism Center
3730 Edison Lakes Parkway, Mishawaka, IN 46545
Contact: Pat Sweeney, Family Outreach Coordinator, 574-387-4313


Little Star Center
3777 Haley Drive (opening Spring 2017), Newburgh, IN 47630
Contact: Victoria Blessing-Wade, Family Services Director, 317-249-2242


Lighthouse Autism Center
1550 Pidco Drive, Plymouth, IN 46653
Contact: Pat Sweeney, Family Outreach Coordinator, 574-387-4313


Lighthouse Autism Center
1535 Provident Drive, Warsaw, IN 46580
Contact: Pat Sweeney, Family Outreach Coordinator, 574-387-4313

Opportunity to Become Title V Delegate for Indiana

Indiana Title V Family Delegate
The IN Title V Family Delegate is an active advocate and model of family leadership for all families with special health care needs statewide and represents Indiana on a national level. The Title V Family Delegate is responsible for providing the parent perspective to the IN Title V program. The Family Delegate will serve as the lead Parent Consultant to the Children’s Special Health Care Services (CSHCS) and Maternal and Child Health (MCH) Divisions at the Indiana State Department of Health (ISDH).  The primary responsibility of the delegate will be to plan for and administer the CSHCS Family Advisory Council.

Offering your time and becoming an Association of Maternal and Child Health Programs (AMCHP) Family Delegate will open various opportunities to meet other leaders within your state and country.  Family participation will play a major role within your program or the capacity in which you will serve. AMCHP offers Family Delegates the opportunity to represent their state through the nomination of various AMCHP Board positions. As a Family Delegate, you will become an advocate for your program and be involved with the planning and structure of the CSHCS Family Council. You will build leadership skills, gain experience becoming a liaison to families, the Title V program, AMCHP, and family or other health and human services organizations ( 

Questions and application may be directed to Shirley Payne, CSHCS Director, at 317.233.7046 or

Find the entire application packet below:

Indiana Family Delegate Application 2017
The Association of Maternal and Child Health Programs (AMCHP) encourages Title V programs to appoint a family leader to serve as a delegate to AMCHP for their state.  The Indiana Title V program recognizes that the parent perspective is an integral part of program development and quality improvement for the maternal and childhood population we serve.  Some benefits of being a Family Delegate include:

  • Serve as a voting member to the Indiana program delegation
  • Eligibility to be nominated for board positions with AMCHP
  • Network nationally and statewide with other family leaders through a variety of activities, including the Annual AMCHP Conference
  • Serve as a model of family leadership and advocacy

To Apply:
Submit an electronic application, including a cover letter and brief essay to Shirley Payne, CSHCS Director.  Applications must be received by 3:00 PM EST Friday, May 12, 2017.

Cover Letter:
Please describe your personal interest in being the IN Title V Family Delegate program and address how being a Family Delegate would further develop you as a family leader in Indiana.  Describe what is important to you about developing your leadership skills and what you hope to gain from your experience as a Family Delegate.
Please address the following questions in essay format (no more than 500 words):
  1. What is your motivation for applying to become the Family Delegate for the IN Title V program?
  2. What special interests related to the MCH population, including special health care needs, do you have?
  3. As a family leader, what is one thing you would like to learn?
  4. If you are selected as a Family Delegate, how might Title V staff support you?
  5. Indicate how you would like to benefit from participating as the IN AMCHP Family Delegate. Choose all that apply. If other, please indicate.
a.       Broaden my network
b.      Understand emerging issues from the national level
c.       Develop skills to act as a liaison for family input and/or engage families
d.      Understand my part in Title V
e.       Develop/increase skill level in the MCH Leadership Skills
f.       Other

Questions and application may be directed to Shirley Payne, CSHCS Director, at 317.233.7046 or
*This application was adopted from the Kansas Department of Health and Environment, Special Health Care Needs Program
RESPONSIBILITIES: Specific duties include, but not limited to:
·         Work with the CSHCS Division in all aspects of planning and carrying out the CSHCS Family Advisory Council. The delegate is the lead on planning the agenda, creation of agenda and other meeting and council materials, coordination and implementation of council meetings, and dissemination of all communications to council members.  Assists in recruitment and selection of parent council members.  This position requires mandatory attendance for preparatory and council meetings.
·         Actively participate on the CSHCS Family Advisory Council and serve as a model of family leadership and advocacy; assist in developing the leadership skills of other parents through training sessions during meetings; mentoring parents during the selection and implementation of individual projects; assists council parents in being comfortable and competent in discussing the needs of children and youth with special health care needs (CYSHCN) overall, not just for their own child.
·         Apply applicable leadership skills in developing/selecting family leadership development training sessions. This includes, but not limited to: identifying presentable educational topics and materials, researching community-based resource, and providing technical assistance from the parent perspective to council parents if needed.
  • Serve as a resource regarding community-based resources for CYSHCN to help increase parent knowledge.  Disseminate resource and other pertinent information helpful to families via email,social media, family leaders in the state, and the CSHCS care coordinators while also receiving information back from these individuals and group that will benefit children with special needs and their families in Indiana.

·         Attend CSHCS Team Leader meetings on a monthly basis. Provide family perspective in program planning and program quality improvement as needed.
·         Collaborate with and provide input to various interagency groups, family organizations/groups, and parent organizations/groups on behalf of families with children with special health care needs statewide when needed.
·         Participate in the Annual Title V Block Grant Review process.
·         Participation is required for council, committee, and your board of choice.
·         Attend annual AMCHP Conference and pre-conference Family Leadership meeting of Title V Family Delegates nationwide. Maintain contact with other Family Delegates as a resource.
·         Apply and participate in Federal Leadership Development opportunities or the IN Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at Riley Child Development Center as a family leader. 
·         Assist in the recruitment and mentoring of new Family Delegate when designate term is complete.
·         Assist the MCH Division as needed to support the reduction of Indiana’s infant mortality rate.
·         Participate in the Indiana Perinatal Quality Improvement Collaborative (IPQIC) to promote quality outcomes for Indiana mothers and their babies.
·         See AMCHP Fact Sheet -AMCHP Family Delegate Fundamentals at

A parent of child/children with special health care needs. Preferably a bachelor’s degree, but not required.

Be a parent of child/children with special healthcare needs. Have the ability to look beyond your own issues and concerns. The individual will be able to address perspectives of other families with CYSHCN recognizing the cultural diversity in the state. We would like you to possess excellent organizational, interpersonal, verbal, and written communication skills. Leader will have the ability to multi-task and work well with a professional team as well as families of children with special needs. Also, have interest in the promotion of programs and projects for children and families. Lastly, the leader will have the ability to work in an inclusive manner with families and people of diver cultures. 

Experience navigating state and local government systems and the ability to advocate for CYSHCN and their families and the ability to convey this knowledge to other families of children with special needs. Experience will display a wide variety of services and supports with the knowledge of statewide and local family and disability organizations.

Schedule will vary. Approximately 8-10 hours a month, with the exception of council meetings, attendance at the AMCHP Annual Conference, and LEND program activities.

·        Opportunities for training to expanded knowledge of new and existing MCH and CYSHCN programs and resources statewide and nationally.
·        Enhance existing personal strengths through leadership development.
·        Network with other parents of CYSHCN on a statewide basis and serve as a mentor.
·        Opportunity to offer insight and feedback on current and future programs, policies, and resources materials for the CSHCS Division that will benefit all CYSHCN statewide when needed.
·        Financial support for the IN Family Delegate, including AMCHP conference sponsorship and stipend, may be offered depending on funding availability.