Why independent living is difficult, but getting even tougher

Posted by Michael Collins in Life After Paralysis on August 09, 2017 # Mobility

I consider myself to be independent, although I realize that I am no longer self-sufficient in many aspects of my life. Since my paralyzing accident almost three decades ago, I have strived to live independently and have been able to avoid being housed in an institutional setting. Being independent doesn't mean that I did it alone. Maintaining my current independent status has required considerable effort, income and the cooperation of many others.

State vocational rehabilitation financial assistance allowed me to earn a postponed college degree so that I could reenter the workforce and obtain the management positions I have held during the last few years. That program also paid for modifications to a van that allowed me to resume driving--while remaining seated in my wheelchair; I have since driven over 300,000 miles for work and pleasure.

A significant portion of my career was spent employed in the formal independent living movement, as there is significant infrastructure and funding needed in order to support and manage the nation's network of nonprofit independent living centers. The 2012 establishment of the Administration for Community Living (ACL) in the Department of Health and Human Services has consolidated the independent living program with a broad variety of other aging and disability programs.

That change, coupled with the appointment or hiring of staff who are very familiar with and committed to the continuation of the ability for Americans with disabilities to live independently, was a good move. Despite the creation of the ACL, it is not that easy to maintain an independent living lifestyle in the community even with access to all of the programs within that administration. There are several factors beyond the control of the ACL staff that need to be in place.

The first, and perhaps the most important, is affordable healthcare. People with disabilities on limited incomes are fortunate that there is Medicaid health insurance which in some states covers optional home and community-based services like limited hours of caregivers. Without that, too many people would be sequestered in nursing homes or similar institutions instead of living independently.

Congress is struggling in efforts to repeal the Affordable Care Act and replace it with something unknown that is likely to leave millions of Americans uninsured or facing higher, and possibly unaffordable, premiums. Unfortunately it gets worse, as there is talk of allowing insurers to deny coverage for pre-existing conditions, which would exclude all of us who live with chronic disabilities or who have had diseases such as Cancer earlier in life.

Recently introduced versions of a new healthcare bill also include risks to the Medicaid system as we know it. The Congressional Budget Office has predicted that the current Senate proposal would cause 17 million people to become uninsured in the first year, and even more of us would be without health insurance coverage in subsequent years.

It will take the coordination and support of many different allies in order to help assure a healthy future for everyone who lives with paralysis, or any other type of disability. A few of the dozens of organizations doing that, and acting on our behalf, include: the Reeve Foundation; United Spinal Association; the American Association of People with Disabilities; the National Disability Rights Network; National ADAPT and the National Council on Independent Living.

While many of us may not have the resources or energy to visit Washington, DC and state capitals to meet with lawmakers to express concerns about the future of disability programs, we are lucky that the above organizations and thousands of their constituents do have that time and make the effort. Those of us who remain at home and appreciate the benefits and services we receive that have allowed us to do so have many actions that we can take as well.

Telephone calls, letters and emails to elected representatives and their staff, including in their district offices, may take only a few minutes but there is a cumulative effect; their staff tally the numbers of contacts to help make decisions about which way they should act on issues important to their constituents. Those who really want to make an impact can appear at local town halls hosted by those elected representatives and share concerns in person.

With all of that coordinated advocacy there is a good chance that many of the programs we rely upon can be saved, or even improved.

© 2017 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.