Self-Determination - Questions That Need To Be Asked

May 18, 2010

It often takes a major problem, reversal of fortune, or life-threatening event for us to stop, take a hard look at our lives, and reassess the path that we are on. We seem to need a catastrophe or major roadblock to force us to ask “Is there a better way?” or, “Am I heading in the direction I want to go with my life, or am I following a course that is neither truly meeting my needs nor fulfilling my life goals?”

Now that our human service systems are facing devastating restrictions and cuts, and the numbers of individuals needing service is growing daily, we can no longer wait to ask those important questions of the system that supports the lives of people with disabilities. We need to ask, “Are we heading in the direction we need to go with services? Can we, should we, continue to follow the path of recent years, from which we have not significantly strayed, in the design of supports that serve individuals with developmental disabilities and their families?

Someone sent me a very interesting article the other day by Tom Nerney of the Center for Self-Determination. It was titled, “Lost Lives – The Paucity of Quality in Human Services”. (If you would like to read the full article please follow the link.) Mr. Nerney calls for us to rethink the manner in which services have been provided and to challenge the thought that quality of services equals quality of life. He states that the Medicaid guidelines around which services are designed are “system requirements, and not personal quality of life components.” He notes that “An estimate of the number of pages of regulations necessary to maintain and continue this system easily exceeds 600,000.” He contrasts the unwieldiness of these regulations with another often mentioned unwieldy document – the Internal Revenue Code – which is 75,000 pages long. The complexity of the Medicaid regulations leads to the fact that “...more time and effort in many systems are devoted to billing, billing codes, service definitions and reimbursement issues than to quality.”

Mr. Nerney points out the four indicators of quality that individuals universally list are:

     “A safe place to call home, with authority over anyone who enters and especially anyone who needs to touch his/her body

      Real membership in, and contribution to, the community with control over the means of transportation

      The support needed to continue relationships and forge new ones, including intimate ones

      Support to end near total impoverishment virtually required at the intersection of Medicaid and Social Security”

He notes that our current systems, at their best, provide the services that an individual needs in order “to get up in the morning” instead of helping them define and fulfill their own life goals so that they would “have a reason to get up in the morning.” He states that, “...the unspoken ‘bargain’ made with many individuals who need support is to require all or most of their everyday freedoms to be surrendered in return for support.” That situation is only going to be further reinforced as our population ages and the numbers needing services swamps the current system. “Within the developmental disability population more individuals live at home with an aging caregiver than are currently served.”

The changes that must be made in order to build a system that would truly provide quality of life are global. They would include major revisions in the regulations that now govern service development, inclusion of resources and opportunities from the private sector, and focus on the building of lasting, caring relationships – “persons served without close committed relationships are most in jeopardy with regard to health and safety.”   It is also critical, as outlined by Mr. Nerney, for us to enable people with disabilities to throw off the cloak of impoverishment that is sustained by the very systems that are providing inadequate supports, as well as assuring that the individuals who offer direct support, are provided with a living wage and benefits.

Mr. Nerney concludes by stating that, “To continue the present system is not only fiscally unsound, it consigns those served to lives lost to loneliness, personal impoverishment, and full or partial exclusion from real community life;  lives lost to regulations, program requirements, surrendering basic and ordinary freedoms; and lives lost to a sophisticated pretense at quality without equality based on shared universal human aspirations for a meaningful life.” I applaud Mr. Nerney’s answers to the questions that need to be asked, but I have to admit I only have more questions after reading this article. I can’t seem to frame a picture of what a system which truly provides quality supports would look like. How can we ever design a system to meet the incredibly diverse and increasingly complex support needs of the developmentally disabled population in a manner that will provide quality supports, be economically efficient, and guarantee a meaningful life?  Even by asking that question, I feel that I am probably missing something. Have I become so conditioned by the complexity of our current system that I am missing the role that simplicity needs to play in formulating a system that offers true quality of life?

The only thing I am sure of is that we need to decide where we are going. It is impossible to plot a course when you do not know your destination. It seems for years that we have been trying to get to some ephemeral “somewhere”, a place of quality and equality. We have traveled from institution to group home to self-direction with no one thing ever providing the real answer. Once and for all we need to know where we should be heading and what the most direct route is to get there.

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