Why Self-Advocacy? What’s at Stake For Consumers with Disabilities

Self-Advocacy. Many in DC are focused on cutting services that millions of people rely on, it’s up to us to pressure our representatives.My name is Daniel Winchester and I am a resident of Manhattan, in New York City. I was born prematurely with cerebral palsy in 1952, which affects me in multiple ways: I have profound hearing loss to near deafness, a complete lack of coordination of upper limbs, and a mild speech dysfunction.

To date, I am unable to walk and I use a power wheelchair for my mobility needs. I have very limited use of my hands, and my speech is somewhat inconsistent. I also live with chronic pain, due to spinal instability in the cervical (neck) region, as well as a recently diagnosed and highly rare heart defect.

Despite all of this, I am able to lead an active life with the unstinting and unconditional support of Independence Care System (ICS), one of the best and most progressive managed long term care agencies in New York.

I joined ICS in 2012. I am also an integral part of the Civics League for Disability Rights. I earned a doctorate in developmental psychology from Albert Einstein College of Medicine. I was appointed by our present Governor Andrew M.  Cuomo’s late father, Governor Mario Cuomo, in the late 1980s to serve as consumer representative on the New York State Developmental Disabilities Planning Council. I served the council with pride for six years, learning firsthand just how public policy is created – for better or worse.

ICS facilitates self-determination and consumer choice for New Yorkers with disabilities. As an advocate, I know that in order for our independence not to be compromised we need to know some basic facts – because inaccurate or misunderstood concepts about disability rights or our daily needs often find their way into policy decisions that have a detrimental effect on our daily lives.

For example, there’s a commonly held misconception among conservative groups that the Americans with Disabilities Act (ADA) permits people with disabilities to collect money when they file lawsuits against small business that are inaccessible. This is completely false and was never at any point intended by the landmark 1990 legislation. Yet this false belief has been used to push forward a deceitful bill, HR620, which was passed by the U.S. House of Representatives just two weeks ago. The mislabeled “ADA Education and Reform Act” completely reverses the traditional burden of proof for ensuring that a business complies with the ADA, creating confusion and additional barriers to enforcement. You can learn more about this dastardly bill here.

Another issue where public policy affects people with disabilities concerns insurance coverage for complex wheelchair rehabilitation needs (wheelchair accessories) and technology to enhance the quality of our lives. As ICS member Stephanie Wallace wrote on this blog last year, “complex rehab technology includes many things that people with disabilities rely on to be healthy and independent,” but policy directives and regulations from the federal Center for Medicare and Medicaid Services (CMS) that determine payment can have disastrous consequences, and require our constant vigilance.

As the current threat to the ADA illustrates, we simply cannot afford to take anything for granted, even policies that have long been in place can be weakened or reversed. For example, Money Follows the Person and Community First Choice are both critical policies that today make it possible for people with disabilities to live independently in the community, rather than be confined to institutions. These policies must be protected.

  • Money Follows the Person (MFP) was initiated by the federal government more than a decade ago to help people with disabilities who receive services paid for by Medicaid to move from institutional care, such as nursing homes, to living in the community. New York has participated in this program since 2007.
  • Community First Choice (CFC) was also created by the federal government to make specific services widely available in the community, in order to make it possible for people with disabilities to live outside of institutions. This includes assistive technology, home-modifications and transportation.

It’s important to understand that none of this infrastructure – which we, as people with disabilities, must have in order to live outside of institutions – can be taken for granted. These policies were created by our government because advocates with disabilities demanded them, and they can be changed by our government if we allow that to that happen.

It’s up to us – New Yorkers with disabilities – to preserve and protect the fundamental infrastructure and services that we need to be independent, including the services that ICS provides: homecare, rehabilitative services, social events including networking, and vital case co-management.

In these uncertain times when many in Washington DC are focused on undoing the social safety net and cutting services that millions of people rely on, it’s up to us, as consumers, to pressure our state and federal representatives, and to educate them to understand our needs and give them the information to resist the forces of “austerity” in the corridors of power. Those forces seek to undermine the gains we have successfully and often painfully achieved over the 28 years since the ADA was signed into law in 1990 by President George H. W. Bush. It’s up to us to make sure that does not happen!

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