August 26, 2010

I’ve been an advocate in the developmental disability community for about twenty years. The terminology that is used to describe people, services, and supports changes frequently with every change in how, where, or when services and supports are provided. Instead of simplifying things, being more respectful, or becoming more “person-centered” the new terms frequently just become another way of distancing or separating people with developmental disabilities from the mainstream of society.

Take the term “person-centered thinking” – now there’s a concept. Do we really need a term to remind us to think about people as individuals rather than as a group? Instead of expanding to “person-centered planning, person-centered services, and person-centered approaches” shouldn’t we just be acknowledging everyone as individuals, family members, community members, and citizens?

Then there are all of the terms that have crept in along with self-direction or should I say self-determination...self-directed supports....self-directed services, whatever. We have programs called "Real Life Choices" in which a “Support Coordinator” (case manager) develops an “Essential Lifestyle Plan” and a “Health and Safety/Adaptive Behavior/Risk Summary in which we have ”Environmental Modifications” (Do you need a wheelchair, eyeglasses, a special spoon?), a “Behavior Support Plan” (What challenges can we help you with?), a listing of “Social Behaviors” and “Community Awareness” (How do you communicate?, What do you like to do with your time?, Can you tell time?) as well as a “Circle of Support” (Do you have family, friends?) Why, if we have to ask these questions in order to fill out the forms (that’s a whole ‘nuther post), do we need to give them terms that have no meaning to the individuals answering the questions – only to the professional asking them?

One of my favorite terms is “habilitation”. The State defines this as “Habilitation is the process of providing those comprehensive services that are deemed necessary to meet the needs of individuals with developmental disabilities in programs designed to achieve objectives of improved health, welfare and the realization of individuals’ maximum physical, social, psychological and vocational potential for useful and productive activities. Although the specific services will be described in an individual’s Plan of Care, habilitation services are designed to develop, maintain and/or maximize the individual’s independent functioning in self-care, physical and emotional growth, socialization, communication, and vocational skills.” ...In other words – what supports does this person need in order to live his life? This is only the first two sentences in the State definition. It continues on for an entire page.

And then there is the most recent term I’ve been become involved with – "Direct Support Professional", what we used to call caregiver or staff. Now I fully support efforts to professionalize and give due respect to the underpaid, overworked individuals who provide care for individuals with developmental disabilities, but isn’t that title a bit much? There is something inherently wrong with a twenty-five letter, three word term to describe anyone’s job. Think about it nurse...or even better, RN, lawyer, realtor – all respected professions that manage without run-on titles. It just feels excessive even in a community that seemingly wallows in verbiage. All I know is, If President Obama can call the people who help him live his life “staff”, why can’t my daughter?

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