ADA at 25 — Assessing the dream in real time, real lives

 It is not incumbent upon you to finish the job, however, neither are you

free from doing all you can to complete it.   Rabbi R.Tarfon

As an unreconstructed advocate for advocacy I cheer when elected officials “see the light”, when they muddle through the logistics, when they listen to the people, when they rise above personal gain to work for legal justice. And so I rejoice this year as we celebrate the 25^th anniversary of passage of the monumental Americans with Disabilities Act. Experience tells us that well begun is just half done – and so we embrace the next challenge.

Legal justice has been done. To a great extent American institutions have followed the requirements as defined by law. We have ramps and bathroom stalls and elevators, a host of highly visible indicators of legal compliance with the law passed a quarter century ago.

And yet we sadly pause to reflect when Tim Benjamin, editor of Access Press, writes that “there is a crisis in the disability community and it been going on for years.”

Benjamin writes with passion about a harsh – and hidden – reality:

Over the years, dependency without support has created a sense of learned helplessness for many in the disability community. Too many people are in fear of not getting any of the care they need if they speak out. For too many, persistent attempts to control the uncontrollable become too difficult. Hope for the right public policies has its limits; wishful thinking about better luck with the next agency or next PCA is not a sufficient strategy. For some, believing there is nothing can be done to change the situation leads to resignation: “This is the way it is.”

What’s so difficult is that there are many people with disabilities who are employed and pay taxes, who are assets to their community, and are now, because of changes in federal health care law, facing the real potential of having to give up their jobs and their autonomy. These rule changes are compounded by a workforce crisis because of low wages and high demand for personal care assistants. If this catastrophe is not resolved, we may see hundreds or thousands of productive citizens having to move from the community into long-term care facilities—where the next catastrophe could occur. “over the years, dependency without support has created a sense of learned helplessness for many in the disability community. Too many people are in fear of not getting any of the care they need if they speak out. For too many, persistent attempts to control the uncontrollable become too difficult. Hope for the right public polities has its limits; wishful thinking about better luck with the next agency or next PC is not a sufficient strategy. For some, believe there is nothing can be done to change the situation leads to resignation.” http://www.accesspress.org/blog/2016/05/10/editors-column-may-2016/

Bottom line, Benjamin asks ”What was the point of the ADA and in Minnesota, the Olmstead Plan, creating laws for community integration, for educational and job opportunities, transportation, accessible facilities and public infrastructure, when people with disabilities don’t have staff to get them out of bed? What were all these millions spent in the first place?”

The fact is, the vast majority of us, know far too little about the physical and political barriers faced by those we do not know or even see in our daily lives. We are disinclined and ill prepared to assess the needs much less to take action.

We leave concerns of people with disabilities to the individuals and their families and to advocacy groups who are immediately involved. If the law needs to be amended, it falls to them. If enforcement of the law is overlooked, we are unaware and politically impotent. We assure ourselves that engagement with the needs of people with disabilities will land us in a complicated legal and regulatory conundrum best left to the “disabilities community.” Besides, aren’t we just this year celebrating that this fight for justice has been won.

The fact is, acronyms notwithstanding, the concerns of challenged colleagues are basic human needs. If we have the will to understand, the tools are at the ready.  A couple of starting points:

• Best Life Alliance, for example, is a readily accessible digital resource (http://www.arrm.org/ARRM/Advocacy/Best_Life_Alliance.aspx

• Or make it a habit to pick up Access Press on free newsstands everywhere. Better yet, subscribe online at http://www.accesspress.org/subscribe/. It’s a great read for anyone who thinks and cares about disability rights, including the inalienable right to access to information.

 

 

 

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Milestones Mark Impact of Major Federal Legislation

An earlier post offered an intro to the plans for commemoration of the 25^th anniversary of the Americans with Disabilities Act (ADA) (https://marytreacy.wordpress.com/category/disability-issues/) There are scores of activities planned for the ADA’s “silver anniversary”, many – certainly not all – are mentioned in that post. One state event that seems particularly inclusive and experiential is the family day set for July 26, sponsored by the Minnesota Historical Society and the Minnesota State Council on Disabilities. There will be free admission to the Minnesota History Center for all, live music, dancing, film/video and more with ASL interpreters, audio describers, deaf/blind interpreters and open captioning. More at http://www.minnesotahistorycenter.org/accessibility.

Since that post I have come across several thoughtful and informative posts about ADA, including great information in the most recent issue of Access Press, now free and accessible to all. (Note the location of Access Press newsstands and resolve to read it regularly – if the newspaper isn’t handy, find out how to make this essential resource more accessible in your community.) Also since that post I came across a lovely editorial piece on “the beauty of the Americans with Disabilities Act” posted by Susan Henderson, Executive Director of the Disability Rights Education & Defense Fund. It’s a good read and reminder: https://usodep.blogs.govdelivery.com/2015/07/10/the-beauty-of-the-americans-with-disabilities-act/

By interesting coincidence, July also marks the 50^th anniversary of Medicare and Medicaid, officially signed into law by President Lyndon Johnson on July 30, 1965. Today there are more than 54 million people enrolled in Medicare. In fact, there is a good deal of overlap between these two major federal programs. For example, in 1973 disability coverage under Medicare was introduced for people under 65 with long-term disabilities. Significantly, both ADA and Medicare represent the culmination of political “movements” – both represent federal action with profound and permanent impact on virtually every individual, family and institution.

As with ADA, recognitions and celebrations of Medicare/Medicaid are popping up everywhere – in health care facilities, senior centers, places of worship and more:

For armchair celebrants there are great online tools.

• The January 29 issue of the New England Journal of Medicine carried a thorough and illuminating history of “Medicare at 50 – Origins and Evolution.” http://www.nejm.org/doi/full/10.1056/NEJMhpr1411701. It’s everything you ever wanted to know about the legislation and didn’t even know to ask. The article is worthy of serious study and discussion, particularly in light of ongoing political forces and fomentations.
• Earlier this month the New York Times Editorial Board published a helpful discussion of Medicare and Medicaid, with up-to-date information re. the relationship with the Affordable Care Act. http://www.nytimes.com/2015/07/03/opinion/medicare-and-medicaid-at-50.html?_r=0
• The Henry J. Kaiser Foundation offers a history of the road to Medicare – of particular interest, perhaps, to those who’ve lived that history. http://kff.org/medicaid/report/medicaid-at-50/
• Kaiser Family Foundation has also updated a video that traces the evolution of the legislation over the past half-century.
• The Center for Medicare Advocacy has published a powerful resource entitled “Medicare Matters: 50 Insights for Medicare’s 50^th Anniversary” http://www.medicareadvocacy.org/50-insights-for-medicares-50th-anniversary/ The informative narrative offers a great review of the powerful impact of Medicare.   Implicit is the parallel impact of recently passed federal legislation.

At the other end of the mobility continuum the Minnesota Nurses Association is sponsoring a Medicare 50^th Birthday BBQ Bash on Thursday, July 30, 5-9 p.m. at Highland Park Picnic Shelter, 1227 Montreal Avenue in St. Paul.  It’s free and open to all who want to celebrate the life and legacy of Medicare. Check with MNA at 651 414 2800.

Finally, if you happen to be in DC on Saturday, August 1, fill your water bottle and join the Healthcare Justice March, 10:00-Noon at Potomac Park on the National Mall. The National Nurses United and the Labor Campaign for Single-Payer Healthcare are joining forces to commemorate Medicare at 50. More at https://www.facebook.com/events/1571769846-427625,

Too often there is a disconnect between the public and political negotiations inside the Beltway. Both ADA and Medicare/Medicaid are powerful examples of what happens when the body politic and its representatives communicate and create together. Reflecting on the past half century of systemic change reminds us how political and social forces shape the daily lives of everyone. It’s worth the effort to reflect on examples of how the system did, should – and could – work to create institutions that serve the lives of every American.

Update:  http://www.commondreams.org/news/2015/07/24/ada-25-years-after-landmark-civil-rights-law-some-wonder-wheres-equality