The Centers for Disease Control and Prevention reports that 1 in 88 children in America have an autism diagnosis, and these rates continue to rise. Seven years after high school graduation, one in three young adults with autism have no paid job, college or technical school experience, and another 500,000 children with autism will reach adulthood in the next decade.
Disturbing? Yes. In need of policymakers’ attention? Most definitely. Yet the only response to date has been a lengthy debate over narrowing the criteria for receiving an autism diagnosis, as if this will magically make the problem go away. And instead of taking action, our legislators continue to ignore the significant needs of people with autism and their families in the state budget. Governor Patrick had the foresight to recognize the problem, establishing an Autism Commission in 2010, but the commission has yet to submit any report or recommendations, nearly two years after its creation.
Our failure to effectively respond to this so-called ‘autism crisis’ is symptomatic of a much larger problem with how we support people with disabilities in the Commonwealth. The simple truth is that the human services system in Massachusetts is designed to systemically exclude a large number of people with disabilities. The Department of Developmental Services, for example, provides high-quality supports to individuals with intellectual disabilities, if they meet the eligibility criteria. There are many individuals with IQ scores just above the eligibility cut off who have needs as significant as those below, but they are ineligible. As for autism, very few individuals on the spectrum are eligible for any services solely based on an autism diagnosis. One of the few autism specific services that exist in MA supports children under the age of nine, but it is limited by design to serve a maximum of 130 children, hundreds less than the number that qualify.
The Commonwealth has arguably the best early intervention program in the country, yet many children with disabilities fall through the cracks when transitioning from this program to K-12, and even more fall through when transitioning to adult life. In recent years the state has initiated many federally-funded demonstration projects in an effort to develop more effective and efficient methods to serve people, to reduce transition failures and to potentially expand services to those not served. Unfortunately the most common outcome of these demonstrations has been that when federal funding ends, little or nothing changes.
As it stands today, Massachusetts struggles to serve only a fraction of children and adults living with disabilities and as these numbers increase, so too will the demand. So how does the Commonwealth deal with this rising demand? We must start by planning now for the future. First, we must recognize that the number of people served and level of services provided is always driven by the financial resources available. And though those resources may rise or fall as a function of the economy, politics and other factors, they will always be capped. Then we must admit that the current system excludes too many people with disabilities in need of assistance, and that this is unacceptable. Finally, we must eliminate the barriers that exclude so many people with disabilities from living full and productive lives in the community by shifting from a system that ignores some disabilities to a system that serves all disabilities based on level of need, not arbitrary eligibility criteria.
We have the ability to do this. What we need is a commitment from those in a position to make it happen. Massachusetts led the way on health care reform. Now is the time to lead the way on human services reform.
Julie Fitzpatrick is chairperson of the Massachusetts Developmental Disabilities Council. Daniel Shannon is executive director of the Massachusetts Developmental Disabilities Council.