NDSC Governmental Affairs Newsline
March 12, 2009, 2009

Dear NDSC Members and Friends,

On February 26 and 27th, Senators Casey (D-PA), Hatch (R-UT), Dodd (D-CT), Kennedy (D-MA), Brownback (R-KS), and Burr (R-NC) and Representatives Crenshaw (R-FL), Meek (D-FL), Kennedy (D-RI), and McMorris Rodgers (R-WA) introduced the Achieving a Better Life Experience Act (ABLE) of 2009 (S 493/HR 1205). This bill was formerly known as Financial Security Accounts for Individuals with Disabilities (FSAID).

If this bill becomes law, it will allow an account to be held in the name of the individual with a disability. This is important because currently $2000 is the asset limit for individuals receiving benefits under important federal programs such as Medicaid and SSI. Medicaid is the primary source of funding for long-term support services for adults with disabilities. The legislation's intent is to supplement rather than to replace benefits provided by other sources. In addition, money earned on the principal of the trust would not be taxable which means that it can grow tax free.

The accounts have a contribution limit of $500,000. These accounts will give families another tool to use in estate planning along with other mechanisms such as a special needs trust.

Action Needed

Call your member of Congress and ask him or her to co-sponsor the Achieving a Better Life Experience Act (ABLE) of 2009 bill. Some of the talking points are:

• This legislation allows for the establishment of tax-exempt financial security accounts for individuals with disabilities to pay for certain expenses necessary to help them live a productive, independent life in the community.
• The legislation is important because currently individuals with disabilities who receive public benefits cannot have more than $2000 in assets and retain eligibility.
• The legislation encourages persons with disabilities to save for costly purchases that they would otherwise be unable to purchase with their own funds.

You can see the legislation at http://thomas.loc.gov/cgi-bin/bdquery/D?d111:1:./temp/~bdAYd7:@@@L&summ2=m&|/bss/111search.html|

If your Senator or Representative is interested in signing on as a co-sponsor, they should contact:

• Bryan McDonough (202-224-6324) in Senator Robert Casey's office.
• Dustin Krasny (202-225-2501) in Representative Ander Crenshaw's office.

You may want to check the list of co-sponsors before calling your Senator and Representative. If they are already co-sponsoring the legislation, you should still call them and thank them for doing so. The current Senate co-sponsor list is available at the above website. To see the list of House of Representative co-sponsors, click Related Bills HR. 1205.

Stop Bill That Limits Parents' Rights

Summary:

On March 3, Rep. Barney Frank (D-MA) reintroduced a bill (H.R. 1255) that would limit the ability of lawyers to protect individuals with developmental disabilities who live in large group settings. The Voice of the Retarded (VOR) (a parent group who strongly oppose community placements and want their children to remain in these settings), supports this legislation which would limit the ability of these individuals to be represented in class action proceedings against institutions.

A great deal of the progress for the rights of individuals with disabilities to live independent and productive lives in the community have been made as a result of class action lawsuits against states for the denial of individual rights in institutions. For example, the "deinstitutionalization movement" began after the residents of Pennhurst State School and Hospital sued the state in 1980 (Pennhurst State School and Hospital v. Haldemann) stating that conditions at Pennhurst were unsanitary, inhumane, and dangerous, and that such conditions denied the class members (individuals with developmental disabilities) constitutional and statutory rights. As a result, the Court ordered that "community living arrangements" be established for its residents. Pennhurst closed in 1986.

Background:

This bill was introduced in the 110th Congress. However, because of, in part, the protest of advocacy organizations like NDSC, no other action was taken. This bill would limit the rights of agencies who receive federal funds, such as the state Protection and Advocacy agencies for persons with developmental disabilities to file class action lawsuits against institutions.

It is very important that Protection and Advocacy systems are able continue their excellent work on behalf of individuals with disabilities in institutions. Limiting the rights of these individuals harms all people with disabilities.

Action Needed:

Contact your representative and ask him/her NOT to cosponsor or in any way support H.R. 1255. Call the capitol switchboard 202-224-3121 and ask for your Representative's office.

Talking points are as follows:

• This legislation is not needed and would harm individuals with disabilities.
• It would harm the efforts of parents and advocates to work for community services and support needed to live in the community.
• It would limit the efforts of lawyers to represent our constituency.

If you have questions or comments about this Newsline, please contact Susan Goodman at susan@ndsccenter.org.