A few posts back I talked about some aspects of the Big Business of Disability. I want to talk some more about that.

Before it had been the over prescription of medications that got me going. That’s created, in part, by a profit driven system where the “diagnosis,” for want of a better word, is made because there is a drug to prescribe rather than that’s the best thing to do for that particular individual at that particular time.

As I said before I believe that is a symptom of trying to fit a nonprofit model into a profit one. The two clash at a number of points.

However, it is also a symptom of clashes that still happen between professional providers and those they serve. That relationship has improved tremendously over the years but still has some gaps that would benefit from further discussion.

The relationship between professionals and the public they serve is a complicated one that heavily affects the developmental disabilities system, as well as many others where health care and personal supports are involved.

On the one hand, the receivers, in our case individuals with developmental disabilities, their families, friends and close advocates, believe they should be heavily involved in the decisions about what they have and will be receiving in the way of services and supports. Since they are the ones who will be living with the consequences their input makes a lot of sense.

But most of them lack the education and professional experience to meaningfully delve into the incredibly complex formulas around public funding and the distribution of those funds throughout vast networks of service providers.

On the other, those with that education and experience are often far removed from the daily lives of those most affected by their decisions.

Groups like the Council, and some few others, are founded on the principal of this shared relationship. They offer ways that individuals and their families can participate in policy discussions and public officials can hear from them about their lives. These are excellent forums but understandably limited in the range of their influence.

By and large, the broad policy and funding decisions are made by policy makers and professionals further removed from the day to day lives of people at the receiving end. Maybe that’s simply something we must accept as the nature of things but I believe the importance of informing both sides about who they each are and why they do what they do and need what they need is one of our most important advocacy goals.

How often do we hear, privately of course, that those empowered to make the big decisions don’t understand the grassroots needs or that those at the grassroots level don’t understand the complexities of the issues well enough to offer meaningful input? We may like to say publicly that doesn’t happen but we all know it does.

There has been a lot of progress getting the input of people with disabilities, their families and guardians into policy and funding decisions. There needs to be more.

There has also been some progress made in getting people in decision making positions more familiar with the lives of those most affected by those decisions. That’s a harder challenge.

Just as the grassroots people don’t have the time and base of knowledge to dive in to jargon and spreadsheets, those up to their eyeballs in such things haven’t the time to immerse themselves in daily life stories and meaningful site visits that aren’t simply photo ops.

Whose system is it? Everybody’s. With billions of dollars involved and millions of people’s lives there is not anyone who is not affected by the big business of providing services and supports for people with developmental disabilities—from the citizen neighbor and taxpayer to the individual and their family waiting for services to become available to the policy aide in the governor’s office or legislature to the education specialist or private provider.

We all have a part to play. It is important to remember that. It is also important to remember that an awareness of the importance of those other partners is a large part of helping this huge complex system accomplish at least some of what it should.

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Disability in Focus