Changing Assumptions

This is the first post of a series about HCBS and HCBS waivers. To begin on the ground level, however, I'll start with a Supreme Court Decision, because, like certain Supreme Court justices, we don't like to read legal decisions or statutes. The stuff, let's face it, is so dry, if it is on paper, it crumbles to dust in the hands of the reader; it is that dry! Relax. I'll make this as brief as possible.

Two Georgia women, Lois Curtis and Elaine Wilson, both developmentally disabled, had become mentally ill adults. Each woman voluntarily admitted herself to Georgia Regional Hospital, a state-run institution. The treatment the women received in the hospital was successful. Both were declared ready to leave the hospital, and, once again, live in the mainstream. Community-based housing was available to each woman. Neither had an opportunity to reintegrate into her community; both remained confined to Georgia Regional Hospital. Several years passed. Curtis and Wilson filed suit to be released from the hospital under the ADA.

We can learn the art of fierce compassion - redefining strength, deconstructing isolation and renewing a sense  of community, practicing letting go of rigid us vs. them thinking, while cultivating power and clarity in response to difficult situations. -Sharon Salzberg

In June 1999, the U. S. Supreme Court held that the hospitalization of these women was discriminatory (unjustified segregation) in violation of Title II of the Americans with Disabilities Act. The implications were sweeping Thanks to the decision, public entities are legally obligated to provide community-based services to persons with disabilities, provided the services are appropriate and agreeable to the persons affected and accommodation is reasonable, given available public resources and the needs of others who receive disability services from the public entity.

The Court explained it's holding this way. First the institutionalization of people who are capable of living in community settings and would benefit from reintegration into community life, "perpetuates unwarranted assumptions" those held in institutions are incapable or unworthy of participating in community life. Second institutionalization severely diminishes the day-to-day lives and activities of the disabled, including family relationships, social interaction, the possibility of work and financial independence, not to mention educational and cultural opportunities.

The 1999 decision subsequently proved controversial, particularly in affordable (government subsidized) senior housing, as much of that housing now opened to younger, disabled applicants. There were successes and failures, but the principles upheld by the Supreme Court in Olmstead continue to contribute to the greater good.

My next post will talk about changes we've seen in the decade since the Olmstead decision. Stay tuned!

Universal Design

     Born too late to be a Beatnik and too early to be a Boomer, I've pinned my hopes on the Baby Boom.  "No Baby Boomer will accept sitting on the porch of an Old Folks' Home," one of my neighbors in senior housing exclaimed. Sitting on the porch of our senior residence, we agreed; changing demographics, alone, will bring shifts in how we approach aging and independence.

   Added to the challenge of an aging population, American athletes, service members and survivors of acts of terrorism continually enter the mainstream. These realities have changed the face of engineering research, which now includes a medical component. Engineering design for increased function becomes available in the mainstream, as does friendlier home, public and systems design.

“When you focus on someone's disability you'll overlook their abilities, beauty and uniqueness. Once you learn to accept and love them for who they are, you subconsciously learn to love yourself unconditionally.” -Yvonne Pierre, The Day My Soul Cried: A Memoir 

    Decades ago Ronald (Ron) Mace, a Fellow of the American Institute of Architects, introduced a concept he called Universal Design. His concept honored the need of aging Americans to stay in their homes for as long as possible. Mace was also instrumental in the creation of the Center for Universal Design in Raleigh, North Carolina. His idea was not to create a style of design. Rather it was a revolution in how we view design. The end result is products, buildings and outside spaces, which serve as many people as possible, to the greatest extent possible. It is also cost-effective.

    Universal design aesthetically pleasing, as well as functional; the two are, by no means, mutually exclusive. The idea of Universal Design is not to set disabled users apart from others -- disability affects most people at one time or another. Ease of acces and use benefit everyone. You may be surprised to learn of an international grassroots organization, Concrete Change, that seeks to make all homes more accessible to visitors (more "visitable".) 

http://concretechange.home.mindspring.com/index.htm  

   We've long needed to redefine 'normal' and, next, be seeing people as enabled, rather than disabled. Here's to better homes and futuristic communities everywhere!

Finding Freedom

     

 I can never resist telling a story. Eons ago I was excited to shop for my newlywed husband's birthday. I should explain a couple of key differences between us. Gene was a Virginian, whose young life had been rich with cultural and intellectual pursuits. He was a great chess and bridge player. I was a Coloradan, who loved to ski, climb and prospect for minerals in Saguache, but could never have sat through a bridge game.  So what to do?

Never one to shy away from risk, I headed for Holubar Mountaineering, a favorite store in Boulder. I bought a ton of rope and other climbing equipment, right down to a hard hat and proper boots. I proudly made a birthday heap in the doorway of our den. On top I placed the piece de resistance, a certificate to the Colorado Mountain Club Climbing School. 

My beloved's reaction wasn't quite what I'd expected. He was convinced my goal was premature widowhood! "Climbing is so freeing," I protested! Off he went to climbing school, eventually becoming an avid climber.

Freedom is everything isn't it? The price of freedom is risk; it is embracing change. Disability comes to some of us young,  to others late in life. If it comes in our dotage, we simply soldier on, often alone. We keep as much of our dignity as we can, and we cope. Any young person will tell you, to cope is not the same thing as to adapt. 

In recent years, with arthritic knees, I developed a routine for many daily activities. The drill for getting out of my tub was a twenty-step process. In retrospect it was neither comfortable, nor safe, but I'd coped for years. 

Action and reaction, ebb and flow, trial and error,change -- this is the rhythm of living. Out of our over-confidence, fear; out of our fear, clearer vision, fresh hope. And out of hope, progress. 

-Bruce Barton

 
My routines were entrenched, when I met Leonard Lujan. Leonard had been instrumental in modifying my neighbor's bathroom. It was beautifully constructed, but I felt no need to have a similar modification, let alone a free modification. A good friend suggested it would be okay to ask about the bathroom modification program. The rest is history. I love my reconfigured bath; it is like a private spa. Home modification can free people from burdensome, often dangerous, routines. In my next post, we'll tackle universal design, and how major modifications can be brought within financial reach.

We wish you healing! More than this, we wish you freedom! We are here to help!