UNITY TODAY: LOOKING FOR ANSWERS

Acceding to the request of one of New Jersey’s major autism groups, our governor has promised to create a State Office on Autism. He’s done that in the heat of a tight race for re-election so I won’t comment on his promise until after the polls close to avoid partisanship.

The idea is a bad one from every point of view, including the rather lofty perch from which I observed the state bureaucracy as an insider for thirty-seven years and as a disability activist for almost as long. At the same time it raises some legitimate, perplexing issues that still plague our efforts to build an effective cross-disability movement.

The office is intended to streamline the process for being determined eligible for and receiving state services from the Division of Developmental Disabilities (DDD), the major payer for or direct provider of most services for people with autism, except education. That process is indeed maddeningly slow and overly complex for everybody, not just those with autism.

And intentionally so. As in most states, there is no clear entitlement to services provided by DDD. And since New Jersey doesn’t have enough money to serve everyone, it complexifies its procedures, particularly its intake procedures, to discourage applicants or find reasons to declare them ineligible. If you doubt that, get to know an intake worker really well or buy her or him one drink too many.

There’s another reason. DDD, originally the Division of Mental Retardation (DMR), still has an institutional bias against admitting people who are not cognitively impaired but otherwise meet the definition of having a developmental disability. Worse still, for many years, leaders in the field refused to accept autism as a legitimate disability, blaming it on faulty parenting instead. Dr, Maury Kott, the first and long-time director of DMR, led that pack.

The Office on Autism is supposed to overcome these obstacles…except government doesn’t work that way. Every unit within it is a fiefdom and every fiefdom defends its prerogatives to the death. Nobody tells it what to do if it doesn’t want to do it, sometimes even when it does. It defies any order to do so directly or subverts it. If you doubt it, ask any governor, commissioner, or division director who has announced intentions to reform.

So the creation of the Office will only add another layer to the system and alienate those that already exist. It will also alienate many with other developmental disabilities who encounter the same frustrations with DDD and are already upset that their disability is not receiving the same attention that people with autism have recently received, despite having comparable needs.

As someone who believes that the progress of people with disabilities depends on our unity, this kind of fractionalization disturbs me greatly. According to their own statistics, people with autism represent 1% of the total population. That may be enough to capture the attention of a single powerful politician here or there (or several, if your disability happens to be ‘the flavor of the month’) and get a few extra services.

However, it is not enough to command the sweeping social change necessary to overcome the stigma we face as a group, something we can only do through the marshaled political strength of all of us and our families and friends, who, if united, constitute a near majority of voters.

At the same time, while I recognize that we have many needs in common that can be more efficiently and effectively met by tearing down the silos that now artificially separate us, I also recognize that many of us require specialized supports that are of no benefit to the rest of us. This also applies to the need for additional specialized research in every diagnostic category I can think of, research that may well reveal the need for even more specialized services.

How do we reconcile these two contradictory needs, the need for political unity and the specialized needs of people with different disabilities? How do we support one another in getting those specialized needs met without sacrificing our unity in the competition for the resources to meet them?

In the long run, the answer is simple: create a society based on human rights and human values, one in which we stop wasting our resources on unwinable wars and an unsustainable empire; one in which we narrow the obscene gap between rich and poor that accounts for most of the social pathology in this country; one in which the provision of health care is a basic right, not a profit center; one, in short, in which we allocate our resources to maximize our collective human potential, including the potential of people with disabilities, instead of maximizing individual wealth.

I know the answer in the long run, or at least its outlines. What is the answer for today?