Thank you, Senator Kennedy!

As I sit in shock with tears welling, I find it hard to know where to begin with praise and gratitude for Senator Ted Kennedy. With everyone else, I hope against hope that he will overcome his current challenge. While others recount his many major accomplishments, I want to share one personal memory.

In 1980 when Senator Kennedy briefly ran for President, he gave the keynote speech at an Arc Mass conference. He was working hard to bring an end to nuclear proliferation. After his luncheon speech I took my daughter Mary Ann over to meet him. Immediately she said to him, loud and clear, “Why are you angry?” He was taken aback, literally speechless. A few weeks later the magazine Rolling Stone recounted this episode and the reporter said Senator Kennedy had actually softened his tone of voice as a result!

For a long time I have recalled this story with an emphasis on Mary Ann’s insight and her unabashed assertiveness. Today I am looking at the other side of this encounter. Senator Kennedy paid attention to the content of Mary Ann’s question, ignoring the fact it came from a person with a disability. Furthermore, regardless of the source, he acted on the information. This total uncompromising respect for individual people helps account for his determined actions on behalf of all kinds of people in need.

Those of us working in disability advocacy and political activism have much to learn from our hero, Senator Edward Kennedy. Along with millions of other well wishers, I extend to him my gratitude and best wishes for recovery.

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The Family Opportunity Act

The following article about the Family Opportunity Act is excerpted from the Federation for Children with Special Needs' newsletter Newsline, Winter 2006 (Volume 26, No. 3)

It's mind boggling to think that families with children with special health care needs need an act of Congress to keep their families together. Fortunately, Senator Kennedy and Senator Grassley (Iowa), working in partnership with grassroots parent organizations throughout the country, realized they did. Families whose children had complex medical needs were turning down raises, promotions, and other career opportunities to live at the Federal Poverty Limit (FPL; $20,000 for a family of 4) in order to maintain Medicaid eligibility for their children with severe medical needs. If their family incomes were higher, their children would lose the comprehensive health care services provided by Medicaid and they would not be able to afford the health care their children needed without this benefit. The other option was for families to place their children in institutional settings in order to keep their Medicaid eligibility.

On February 1, 2006, after six years of lobbying, Congress finally passed the Family Opportunity Act (FOA). This legislation has three important parts that will benefit families with children and youth with special health needs (including mental/behavioral and emotional health needs).

1) States now have the option of creating a Medicaid buy-in for families who were previously ineligible for Medicaid because their family incomes were too high. Families with children with disabilities who earn up to 300% FPL ($60,000/year for a family of 4) may now buy into their state’s Medicaid program to supplement the health care services not provided by their primary health insurance. Families may now earn more than FPL and still have Medicaid eligibility for their children with complex health care needs. [Note: This benefit is modeled on the Massachusetts MassHealth/CommonHealth program. For more information about CommonHealth, call the phone number at the end of this article.]

2) The FOA provides funding for ten states to establish demonstration projects to evaluate the effectiveness of treating Medicaid-eligible children with complex mental health needs in their homes and communities rather than in psychiatric institutions.

3) Each state will establish a Family-to-Family Health Care Information and Education Center. It is hoped these Centers will be part of a national family-to-family system that provides guidance on programs and services available to families with children and youth with special health care needs and help families determine their future needs. Massachusetts has a Family-to-Family Center, funded by a grant from the Centers for Medicare and Medicaid Services to Mass Family Voices @ Federation for Children with Special Needs. Families that need help accessing public benefits can contact the Mass Family-to- Family Center for assistance and help.

Phone: 1-800-331-0688, ext. 210 or email massfv@fcsn.org.

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Meeting Senator Kennedy

My daughter Amy and I met Senator Ted Kennedy on Feb.22, 2006. I was to appear as a guest on his cable TV talk show to discuss the passage of the Family Opportunity Act, and Amy came along with me. After the taping was over, Amy was invited to say hello to the Senator.

It was an important day, he told her, it was George Washington’s birthday. It was also the Senator’s birthday! He told her that his mother often commented on the fact that he was born on a President’s birthday, and of all Presidents –George Washington’s birthday.

Amy responded by telling him that she also was born on a President’s birthday. She was born on May 29 and she told him, “that was your brother’s birthday, President Kennedy!” The Senator looked at her for a moment and let her message sink in. “How did you know that May 29 was his birthday?”, he inquired. She simply replied, “I learned in my History class in high school and I have never forgotten it.” The Senator sat back in his seat, shaking his head with wonder. “We sure have come a long way”, he said.

You see Amy has Down syndrome and was fully included in general education classes in her high school. While we may think this the norm, he clearly remembered from whence we have come.

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A Tribute to Eunice Kennedy Shriver

The warm smile and greeting from the young lady with Down syndrome who was bagging groceries at the local supermarket was a vivid reminder of the progress achieved by Eunice Kennedy Shriver on behalf of people with disabilities.

Eunice Shriver is one of those rare leaders who changed the world far beyond her original intentions. Special Olympics began with a dual purpose: first, to strengthen the self esteem and sense of worth of the Olympians themselves and second, to promote awareness by the general public that people with intellectual disabilities are fundamentally worthwhile people.

Both of these objectives have been achieved faster and wider than anyone could have predicted. In addition, Eunice Shriver and the other leaders of Special Olympics have learned and grown along with other advocates. A few years ago the program became integrated; now children without disabilities participate alongside those with disabilities. And over time the organization, along with other modern disability organizations, has changed its language usage, discarding the term “mentally retarded.”

Other equally significant goals have also been accomplished by Special Olympics. For example, children participating in Special Olympics not only experience the joys of athletic participation, but they also meet volunteers from their community who welcome them. Some of these volunteers become mentors, even employers, for work opportunities.

Among the many more unanticipated results is the empowerment of families to achieve change for their children, change in public policy as well as improvement in individual lives. As parents and national leaders for policy change during the last 40 years, we can attest to the dramatic improvements made possible by the hard work of Eunice Shriver and others. Both of our adult daughters live semi-independently in the towns where they grew up, a circumstance not even dreamed of when they were born.

Largely because of the work of Eunice Shriver, most famous families no longer feel a need to conceal their offspring with disabilities. Like Eunice Shriver, these well known people have openly confirmed the fact that disability can occur in any family regardless of wealth, intelligence, or influence. They too have celebrated the intrinsic value of people with disabilities.

We thank Eunice Kennedy Shriver for her life of commitment and action on behalf of our family members with disabilities, first in our country and now throughout the world. And we also thank her for her example as an effective advocate and teacher!

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