Older Americans and People with Disabilities - Bridging the Disconnect

From Steve Gold (8.23.2010):

Older Americans and People with Disabilities - Bridging the Disconnect.

by Steve Gold

Information Bulletin # 320 (8/2010)

This Information Bulletin is an attempt to bridge and solidify advocates from two communities - older Americans and people with disabilities.  For many reasons, there has been a disconnect between them.

More than two years ago, we wrote "The Older Americans Act: Consumer Choice and Control over Long Term Care," (see February 9, 2007 Information Bulletin).  We reviewed how Congress' amendments to the Older Americans Act and its "Choices for Independence" began to provide services for people to remain in their homes, instead of going into nursing homes. 

The Older Americans Act was for the first time really focused on community!

The OAA provided grants for States to develop a "single point of entry"
for long-term care, so people would know what community-based services were available in order to avoid institutionalization.  This single point was through the "Aging and Disability Resource Centers" (ADRC).  It also adopted the "consumer model" so people could self-direct care and services.

The Older Americans Act is up for reauthorization in 2011. Yes folks, Congress will have to face whether or not the "Aging and Disability" centers will be refunded.  This reauthorization will provide a forum and opportunity for these two communities to discuss how well they have worked together, how well the ADRCs are functioning, if they are serving both older Americans with disabilities and younger Americans with disabilities and what changes should occur.

There are a number of issues which we hope both communities understand and
address:

1.  Medicaid is the same funding stream for long-term community care and
   nursing homes for all people with disabilities, regardless of age. 
   Cut-backs and reductions of Medicaid services impact every disabled
   person, and State legislatures' common attacks on services will hurt
   people regardless of age.

2.  Yes, these two communities do not agree on everything (e.g., assisted
   living, identifying oneself as having a disability), but there are
   unequivocally common interests.  In an era of reductions and attacks by
   States on community-based services, it is critical to put aside
   differences and join to fight what the two communities have in common.

3.  There really is power in numbers!  Can you imagine a State legislative
   hearing with twenty-five year old wheelchair uses holding hands with
   seventy-five year old wheelchair uses demanding their right to live in
   the community and not being dumped into nursing homes.

4.  How about next year, during the Congressional reauthorization
   hearings, joining forces?  Tell Congress that all people with
   disabilities, regardless of age, want the right to receive services in
   their own homes.

5.  The increased Medicaid funds for Money Follows the Person grants must
   focus on getting anyone out of nursing homes who wants to live in the
   community - not just people with disabilities under 60 years old. Older
   Americans do not enter nursing homes because they want to; they do not
   have community-based services offered to them. If both communities
   combined their efforts, they could have a significant impact of
   enhancing waivers - especially in those 20 States that have not yet
   received MFP grants but probably will be applying for them very soon.

6.  The Independent Living Centers serve many older Americans with
   disabilities. Yet, the AAAs and ILCs in most states keep each other at
   some distance.  As the under 60s younger Americans with disabilities
   become the over 60s older Americans with disabilities, yes it really
   happens, the disability issues and culture will cross the age barrier.
   Let's hope that the people take the lead and make these organization
   really work together.

To not take the 2011 reauthorization as an opportunity to address these issues and to jointly work out strategies is perilous.

POWER concedes nothing without a struggle.

    Steve Gold, The Disability Odyssey continues

Back issues of other Information Bulletins are available online at http://www.stevegoldada.com with a searchable Archive at this site divided into different subjects. 

To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.

Comments

[Debbie Jordan]

I'm delighted to see this issue addressed! Since my husband turned 50 and we joined AARP (my 50th was 6 months later), I've tried to communicate with people at AARP about the need for better understanding of people with disabilities. My efforts have always been met with something between silence and an attempt to change the subject to the need to focus on "active seniors"!

Just what do they think disabled people do with their time? Maybe we can't do everything that healthy people do, but we certainly have no intention of vegetating in our self-pity! And why is it that every time a person with a disability speaks up for the civil rights and respect due every human being, we're accused of being bitter?

I'll tell you who the bitter ones are! They're the people who played while their bodies were slowly decaying until they were plunged into a disappointing condition called "old age." The wise person accepts that condition with grace, adaptation, and changed but renewed activity!

[charles]

Hello , I am a double stroke survivor who lives in his own home alone , very happy that I was able to recover from two very dibilitating hemmoragic strokes. Other than not being able to climb a ladder to do maintenance , I believe I do very well at keeping 1.5 acres mowed , and no I do not wish to live in a nursing home. If our senator's & congressmen and women , think this is so wonderful, the answer to living a life of disability , shame on them. Yes I require assistance from time to time , yet I am no where near wishing or wanting to live in a uinstitution.

[Eleanor O'Donnell]

This is an excellent issue and bringing both the seniors and those younger with disabilities can only be a winner. I am a 75 year old retired PT with disabilities due to MS. I have found that the stigma of disability among peers is greater with the seniors. I wonder if it's because as you age you know more people with disability problems who you knew "before" . And you are afraid that this could happen to you too. Disabilities are not catching but emotionally vulnerable seniors find them difficult. I think those younger have gone through years of adapting and learning that life goes on and can still be good. Maybe we should mentor a seniorand that senior can mentor other seniors.

[Mike Zelley]

Steve Gold is one the smartest people on the planet. Thanks Steve. Never stop. I am a 66 year old paraplegic running a $2 million company with great employees who are both older and disabled. I have a wheel in both populations, and love my friends and advocates in both arenas. Like Steve says, forget about the 10% we disagree on and become warriors on the other 90% of issues we have the power to change.