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From the Executive Director
Richard J. Robison
Federation for Children with Special Needs

Executive Director, Richard J. RobisonFinally, the Health Care Reform debate has ended. The President signed the “Patient Protection and Affordable Care Act (P.L. 111-148)” on March 23, 2010. While media coverage of this historic event has highlighted the controversial issues and breadth of reactions to the legislation, the bill does include key policies that will benefit many families of children with special needs. Many of these have escaped broad media attention. For instance, as the new law is phased in, it will ensure that everyone has access to health insurance. It also prevents health insurers from refusing coverage to children with “pre-existing conditions.” Families of children with special health needs no longer will have to fear financial catastrophe will result from their child’s diagnosis.

The new law includes continued funding for the Family-to-Family Health Information Centers. These centers, located in every state, help families raising children and youth with special health needs access services, health care information, and supports. The Massachusetts Family-to-Family Health Information Center is a project of the Federation.

Two additional important aspects of health reform, which will positively change the quality of life for thousands of individuals with disabilities in the years to come, have virtually escaped public discussion. First, the bill contains the provisions of the CLASS Act, (Community Living Assistance Services and Supports). The purpose is to help adults with “severe functional impairments” obtain the services and supports they need to stay functional and independent, while providing them with choices about community participation, education and employment. For many years, the community of advocates for individuals with disabilities fought to “establish a national, voluntary insurance program for purchasing community living assistance services and supports.” This act now includes provisions that will provide a cash benefit to individuals with ‘functional limitations,’ so they can purchase the non-medical services and supports necessary to maintain community residence. This is a huge step forward for adults with disabilities.

A second provision will extend the Medicaid “Money Follows the Person” Rebalancing Demonstration program through September 2016 (effective 30 days following enactment), and allocate $10 million per year for five years to continue the Aging and Disability Resource Center initiatives through 2014. This will provide states with new options for offering home and community-based services through their state Medicaid programs instead of having to apply for a federal waiver. Finally, it will establish the Community First Choice Option in Medicaid to provide community-based attendant supports and services to individuals with disabilities who require an institutional level of care. For many years, Senator Kennedy worked to create this option for families and individuals, and it is a dream come true. Individuals with disabilities will be able to remain in their communities with appropriate supports and services!

On the day President Obama signed the “Patient Protection and Affordable Care Act,” we received a message from Connie Garner, who for many years worked with Senator Kennedy as a staff member of the Health, Education, Labor and Pensions (HELPS) Committee. She wrote, “I wanted to wait until today, when the health care bill was signed, to congratulate all of you for the most incredible effort I have ever seen to achieve social supports for those with functional limitations. Remember how this was never going to happen? How this was not the right time? How it wasn’t really health care? …. well you overcame all those obstacles by working together and bringing forward the voice of ‘real people’ to their representatives in Congress. I want to thank you all on behalf of Senator Kennedy’s wish and real desire to see this program enacted.”

The Federation, in turn, extends our sincere thanks to Connie for her leadership and perseverance in helping to achieve this incredible victory. With these new reforms in place, our family members’ futures are much brighter.