In September, I began addressing “when the bus stops coming.”
Gene Bensinger, a longtime friend, autism advocate and father of an adult with autism broke it down in this way and I think he hits the nail on the head. “The main issues that face the broad ASD community involve ultimate goals, infrastructure creation, development, resource availability (scale) and sustainability.”
READ PART I FROM SEPTEMBERThe pervasive “independent living” or “the as independent as possible” goal is, in his opinion, and I tend to agree with him on this, not only unattainable for many from a quality and financial aspect, “but it is outdated and the wrong goal when applied to everyone. This singular approach leads to a lot of unnecessary conflict over specific community settings and resource allocation. Support needs and wants vary dramatically from person to person. The numbers tell us that the deinstitutionalization battle that gave us independent living as a priority is long past. The focus of advocates and families should shift to optimizing “healthy, connected (versus independent) community living. The goal of healthy connection to people, communities and resources does fit everyone. It also transfers the choice of specific ‘setting’ type to the individual consumer through the mechanism of person-centered planning. Regulators are fast moving in this direction and long-established advocacy groups should overhaul their priorities and efforts to match current conditions.”
And he added, “We need to create brand new infrastructure. The current I/DD system was cobbled together over the last half century with zero consideration for the autism community.”
In this case maybe we do need to reinvent the proverbial wheel.
He continued, “Public funding alone will not get resources built. We need to engage the private sector on every single issue with coherent policies in education (especially post-secondary), housing, jobs, programs, oversight, operations, and funding (including tax policy.). We also need to create long overdue career paths in personal support.
“Local programs in all issue areas, (many historically family led), can be great great [and much needed] but scaling up [and replicating] these programs is a huge challenge. Current public policy doesn’t incentivize attracting the investment capital that is essential for growth. Attracting capital from multiple sources should be a top priority. One exception has been the flood of private investment into the ABA (behavioral health) supports sector. Nearly every large national or regional multi-site ABA provider is now owned by deep pocketed, disciplined private equity investors. This is night and day versus 5-10 years ago and has improved availability and access to therapeutic supports. It has been a huge win for families but is not without challenges. Oversight is critical.
“Finally, sustainability needs to be an overlay on all adult focused efforts. Multigenerational solutions are required. The intensity and diversity of supports and services that our community needs and deserves does not end when the bus stops coming. It’s followed by 60-plus years of challenges and opportunity that is inevitably transferred to the next generation.”
Overwhelmed yet? We’ve been thinking about it for two decades and we still are. Unfortunately, that is just one tangent of thought in the day of the life of an autism parent.
I’d like to thank Gene Bensinger for contributing his expertise and knowledge to this column and for his always passionate, well-researched and deeply educated opinion.
Next month I will focus on some innovative things Turning Pointe is doing to help bridge the gap into adulthood through programming, collaboration and community.
