Medicaid Waivers for the Developmentally Disabled - Ideas for Change in America: The Fight is Not Over - End Waiting Lists for People with Developmental Disabilities

The Fight is Not Over - End Waiting Lists for People with Developmental Disabilities

Published May 19, 2009 @ 06:35PM PT

The fight to eliminate waiting lists for people with developmental disabilities did not end with our Change.org idea to fully fund the Medicaid Waiver program. We are now promoting a petition to end waiting lists.

Sign the petition at:

http://www.gopetition.com/petitions/noewait.html

It reads:

A Resolution:

Health Care Reform Must Eliminate Waitlists and

Allow for the Continuation/Portability of Services Across State Lines

Submitted to the President of the United States and Congress

WE HEREBY:

RECOGNIZE that across the country hundreds of thousands of people with intellectual and other developmental disabilities languish on “waiting lists” for services and supports and cannot move freely from state to state once they acquire services, as they then go to the bottom of the waiting lists in their new state;

RECOGNIZE that the failure to provide funding for vital and critical services and supports creates waitlists that require years to climb to the top of the list;

RECOGNIZE that the failure to provide services and supports can lead to the loss of skills, unemployment, isolation, and family crises including serious emotional, physical health problems and premature death;

RECOGNIZE that the failure to allow for the continuation/portability of services across state lines causes people to lose their supports when they move to another state because of job relocations, military transfers, or the need to take care of a vulnerable family member.

AFFIRM through signature of this resolution that our country’s laws must be changed and federal funds provided to help states eliminate the waitlists and authorize continuation/portability of services and supports;

SEEK SOLUTIONS and LEADERSHIP to solve this critical problem;

URGE the President and Congress to work together to eliminate waitlists and provide continuation/portability to services and supports to this country’s population with intellectual and other developmental disabilities inconjunction with health care reform.

To keep informed on this vital issue, email noewait@noewait.net with the subject, “Keep me informed.” Mail completed petitions to PO Box 411, Parker, CO 80134, fax to 303 689-9221 or scan and email to noewait@noewait.net

Help us to promote the petition on all social media. Our goal is to have 500,000 signatures in 6 months.

Comments

Let's help this get done! For 24 years my daughter and I have been fighting for servises but because she has no MR level only physical dissabilities she slips through the cracks. As an adult now and a current resident of Maine the state wants her to reside in a nursing home. A 24 year old that attends college and wants to support herself! She has no MR level therfore there is little to no funding for her to live in the community. Now she is on a waiting list to become a NH resident were her choices are larger! This is the USA , is it not discrimenation for her not to be able to move from one state to another freely as a citizen of this great country! In order for her to get the services she has now I handcuffed us to her highshcool doors and was arrested ( proudest day of my life). We should not have to go through such drastic measures for rights that are ours as citizens!!

Posted by Jody Goode on 06/10/2009 @ 09:27AM PT
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Sometimes a reality check is in order to grasp the magnitude of a situation. I encourage people in each state to try this simple math to better understand how each state values this population.
Using Florida as the example, use the same formula in each state, to get an idea of how big the issue really is where you live. Substitute your state's population and do the math.
Florida has about 18,000,000 people. Depending on what definition is used, the prevalence rate for mental retardation is about 2.5%, or 450,000 individuals. Of those about half are either sufficiently high functioning or have good enough natural supports that Waiver services are not essential, leaving 225,000 persons. Of those about 20% (45,000) are school age, and receive services through P.L. 99-457 and IDEA, leaving 180,000 eligible adult consumers. Florida serves about 32,000 on the waivers and reports a waitlist in the neighborhood of 16,000, thus identifying under 50,000 who are eligible and receive or need services. The disparity, 130,000 souls, is the tragedy hidden behind the numbers. Try this math for each state and try to wrap your mind around the real magnitude of the situation.
Then remember this....that's just MR, and does not include CP, Spina Bifida, Prader-Willi or any other eligible developmental disability.

Posted by Glades Area Arc, Inc. on 06/10/2009 @ 11:03AM PT
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My daughter just completed her last day of public school. So far we have found no services for her. The waiting list is horrible, and all we can do is hire a babysitter for her. Everyone we've talked to assumes that some other agency has the services she needs, but none seem to exist. This is a terrible problem and affects families all over.

Posted by Suzanne Kirby on 06/11/2009 @ 09:36PM PT
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Hi !

It's a great proposal and I hope it gains momentum ..!
If people (individuals) with disabilites and their respective families have the opportunity to relocate due to a betterment for employment, yet the benefits are not potable to another State, that actually seems to be prejudicial. We need these laws changed to make them potable across all 50 States ..
Please act promptly on these critical measures ..

Regards,
Paul

Posted by paul houle on 06/14/2009 @ 03:38PM PT
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