Here’s a little bit about me, I live and work in the field of Autism as a parent to my 31-year-old son, Michael who experiences characteristics of Classic Autism and am an Autism Consultant specializing in Adults with Classic Autism for supported employment and living providers, using best practice, evidence based strategies for communication, socialization and more. I am often asked why I work in the field of Autism and Developmental Disabilities and my answer is simple, so my son and those similar to my son will have the opportunity to live, work and recreate in their community the same as those who do not experience disabilities.
Since 1983 Michael’s life has been through a succession of new theories, policies, laws, services and supports. To me, he’s my son, a human being and valuable member of our family. For 31-years It has been a process of diagnosis, early intervention, formal education and now young adulthood. Each step of Michael’s growth and maturity has been exciting, a blessing and frankly a relief, shrouded by a list of “services” that often made us feel that we did something wrong, there was something wrong and in fact, the professional will measure how wrong things are.
Through Michael’s formal education, he had many experiences. He had some incredible teachers who were invested in him and his education that I cannot begin to say enough about; their commitment and positive attitudes, while others treated him in a fashion that would now be considered abuse by today’s standards. It was because of the latter that I had the opportunity and privilege to developed and coordinated a Regional Autism Consulting Cadre that was a collaboration of teachers, families and community providers invested in learning about autism and invested in providing ASD best practice, evidence based supports for the students in Southwest Washington.
Fast-forward 10 years that Michael has been out of school, he lives in the community (that has had its challenges) and that is it! It’s been a struggle to find the right match. In my opinion the Supported Employment and Supported Living industry has not caught up to the understanding that those with ASD need specific supports and strategies to sustain communication, social/emotional regulation, and sensory needs to name a few, this really isn’t a secret! That being said, our nation is looking at ways to support all those who experience developmental disabilities, but it can’t be “one-size-fits-all.” Many will argue that it is because direct service providers do not get paid a living wage; there is often staff turn over and the lack of training. All of which is true, but is that the real reason?
From my vantage point as a parent and a consultant, it seems to be more about deficit based supports, silos of services, plans without clear direction and unfortunately, the lack of communication supports for the person with Autism; “What do I want for my Community Life?” Supports are based on a person’s measurable deficits and services chosen from a menu of options, rather than specific strengths, interests, needs or wants of the individual. In addition, training and supports are typically based on the silo’s menu of service options and the “one-size-fits-all” mentality. Input on the direction and plan for services for the focus person is typically gathered from other’s experience and perspective of the person with ASD, not through a functional process of communication for the consumer.
What were Case Management services have turned into Resource and Budget Gatekeepers. It is the parent and family that will continue to be the lifelong Case Managers for their sons and daughters. Case Management is an important function to the lives of those with Autism (Classic or otherwise). The resources for my son are vast and many and as his parent and guardian, it is my other fulltime job. I’m not saying this to whine or complain, it’s reality, I love my son and I take my responsibilities very seriously because his life depends on it.
The people and professionals in my son’s life looks like a cast of thousands (okay, I’m exaggerating a bit). To get all these people on the same page and working together for Michael’s benefit it is important that there is a respectful process and facilitation of a Person Centered Plan (PCP) directed by Michael. What brings life to a PCP is the mapping of resources that includes timelines, those responsible, outcomes, accountabilities and follow-up meetings until the goals have been met. This could make all the difference in the lives of Adults living with Classic Autism in the community. It’s important to note that our social service system will never have all the funds or resources necessary to meet the specific needs of each and every person; it is a piece to a larger picture and plan.
A facilitated, working plan with the focus person directing, can be the tool that support the efforts and commitment of the sons and daughters that the Case Managing parents and families use to elevate their adult child life’s potential….whatever that may be! For us this is a lifelong commitment, with no real road map and often times a trail blazing experience. As a parent and guardian for my son, I am thankful that Michael has so many resources to manage and yet I face the overwhelming task of accessing and managing a list of resources that continually changes.
I applaud Medicaid for their efforts in changing the language for Home and Community Based Services (HCBS) and look forward to the dawn of each state’s interpretation, especially ours, Washington State.