Independence Day Message Re: Community Choice Act

The disability community is locked in a battle with some powerful forces that oppose a policy change which part of our core set of principles.  Namely, fixing the institutional bias which has imprisoned people in nursing homes for decades.  None other than Pres. Barack Obama, has reneged on promises made during the campaign to enact the Community Choice Act which he was a cosponsor of when he was in the U.S. Senate.  They say that the pen is mightier than the sword, so this weekend I wrote a letter to the President.

July 4, 2009

The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500

Dear Mr. President:

Please accept my well wishes on this Independence Day and Happy Birthday to your daughter Malia. Certainly this is an important day for you, both personally and in your official capacity as President of the United States of America. As a fellow attorney, I thought you might find it interesting to know that it is part of my annual practice to reread The Declaration of Independence on this day. I'm sure you would agree that it is an inspiring document that has poetic properties. Also, you should know that as a person with a severe physical disability, the word "Independence" has a great deal of significance to me and the millions of other people that are part of the Independent Living Movement, also known as, the Disability Rights Movement.

It has been my privilege to know many of the founders and leaders of this distinct civil rights community. When I think about the opportunities that they have opened for me and other Americans with disabilities, I am proud to consider myself associated with this chapter of American history. I was present at the oral arguments at the US Supreme Court that led to the landmark Olmstead decision which held "the proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions.".

Sadly the promise of full integration of all our citizens, as envisioned with the Olmstead decision, has not yet been realized. Every week I receive desperate phone calls with the repeated story that an individual is stuck in XYZ institution and wants to live freely in the community. I know this story firsthand because I spent 9 1/2 years in a rehabilitation hospital before I went off to college and ultimately law school.  At some point many years ago I pledged to myself that I would not forget my institutional roots and try to lend a voice to those less fortunate. 

It is in the spirit of this commitment that I am writing to you asking that long-term care reform be included in your health-care reform efforts.  When you were a US Senator you saw the merits of such a policy by becoming a cosponsor of a piece of legislation called the Community Choice Act, which would end the institutional bias.  Likewise, during your campaign you spoke directly to the disability community pledging to enact this important legislation.  Until recently the White House webpage included affirmative language relating to passage of the Community Choice Act.  It was primarily because of this promise that I crossed party lines and voted for you. 

Regrettably it seems that you have forgotten your commitment to enact the Community Choice Act and, more importantly, have disregarded what this broken promise means for real Americans with disabilities.  Thousands of people will be warehoused in nursing homes, where many of them will die. Certainly it will be expensive and difficult to accomplish such a major shift in health care policy.  But the idea of ignoring this issue, as some of your advisers have suggested, will only be more costly.  As the baby boomers enter retirement, the ranks of people that will need additional assistance will only grow further.  Under the current situation, individuals can impoverish themselves and become eligible under the Medicaid program for nursing home services.  As a nation we need to find a balance between preserving public resources and promoting the independence of people with disabilities.  Respectfully, I asked that you and your advisers take a second look at the Community Choice Act and include it in your health-care reform initiative.

Very truly yours,

T.K. Small