1. The Affordable Care Act (ACA) and Children with Special Health Care Needs Carol Tobias Boston University School of Public Health

2. The Catalyst Center: Who are we? A National Center dedicated to the MCHB outcome measure: “…all children and youth with special health care needs have access to adequate health insurance coverage and financing for their care”. A Cooperative Agreement with the Maternal and Child Health Bureau of HRSA Housed at the Health and Disability Working Group at the BUSPH

3. Who are CSHCN? CSHCN have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and also require health and related services of a type or amount far greater than required by children generally.* *McPherson, M, et al. A new definition of children with special health care needs (Elk Grove Village, IL: Pediatrics, 1998),102: 137-140 **Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2005–2006. (Rockville, MD: U.S. Department of Health and Human Services, 2007). Children in the US have special health care needs** 10.2 Million Children in the US have special health care needs** 1 in 7 (13.8%)

4. Insurance Coverage of CSHCN 9% of CSHCN were uninsured at some point during the survey year, 3.6% were uninsured when the survey was conducted.

5. Adequacy of Coverage Co-payments Deductibles Benefit limits –Therapies –Medical equipment –Supplies –Mental health Annual or Lifetime benefit caps

6. What do CYSHCN need from health care reform? Coverage that is: Universal and continuous Adequate Affordable The Patient Protection and Affordable Care Act of 2010 (ACA)

7. Universal and continuous coverage

8. Ban on coverage denial for pre- existing conditions Effective 9/23/2010, Applies to most children under age 19 with certain restrictions 20,000 applications for children’s coverage were denied for pre- existing conditions in 2008 Most of the ifs, ands or buts about this provision will be eliminated by 2014

9. Other provisions Dependent coverage for youth up to age 26 No rescission of coverage regardless of the cost or amount of services used, effective Sept. 2010 Guaranteed issue, effective 2014 Exchanges for small employers, families and individuals will offer insurance with the provisions above in 2014 Maintenance of effort for Medicaid and CHIP

10. Grandparents But….. Many privately insured individuals will be in grandfathered plans Grandfathered plans only lose this status if there is a substantial: –Increase in premiums or –Reduction in coverage “Substantial” – to be defined

11. Adequate Coverage

12. Essential Benefits Effective Jan, 2014 plans offered through the Exchanges (and some outside plans) must provide Grandfathered and self-insured plans are exempt* * Approximately 80% of privately insured individuals receive coverage in plans that would be considered grandfathered or self-insured today.

13. Typical coverage gaps for CSHCN Habilitative therapies: physical, occupational, speech/language**** Prescription medications**** Durable medical equipment*?*? (devices) Consumable supplies: diapers, wipes, hearing aid batteries, disposable dressings, etc. Eye glasses, hearing aids**** Mental health services**** Dental care****

14. Eliminating benefit caps Effective Now –no more lifetime benefit caps for existing or new plans –no annual benefit cap of less than $750,000 Effective Jan. 2014 –no annual benefit cap at all BENEFITS can still be capped, e.g. 20 physical therapy visits, 15 mental health sessions.

15. Other improvements to adequacy Medicaid benefits, including EPSDT, will be available to children < 133% of FPL Health homes for specific chronic conditions Increase in Medicaid rates for primary care services to match the Medicare rate.

16. Affordable Coverage

17. Components of affordability Scope of covered services Cost of insurance premiums Cost and number of co-payments Cost of coinsurance Amount of the deductible

18. Subsidies and Tax Credits - 2014 Premium tax credits, on a sliding scale, for families with incomes up to 400% of the FPL. Cost-sharing subsidies for families up to 250% of the FPL Available when purchasing silver category of coverage in Exchanges

19. Figuring it Out Exchanges will provide calculators to help families figure out the cost of coverage. Will help to compare both the benefits and cost of coverage Exchanges also provide a website for comparing plan benefits and costs

20. Affordable or not? Most CSHCN receive coverage in grandfathered or self-insured plans Cost-sharing limits not applicable Lower income families still face high expenses unless really low income In spite of all the changes, the more you use services, the more you will pay

21. Summary There are several major improvements in universal and continuous coverage through ACA. Still major gaps in coverage adequacy Affordability?