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[Image: enhanced photo of a cozy cottage behind a flowery garden.]
"Almost every autism family I know is panicked about their children's futures. If we parents were immortal, it would be one thing. But we are not. We will inevitably decline into decrepitude and disease, and then die. Our children, who are often extremely intellectually disabled and in need of continuous care, will outgrow our capacity to care for them, and then outlive us by many decades.Unfortunately, this post is misleading on several points, including waiting lists, policy, and legal jurisdiction. I am worried that, because it presents opinions like "private residences are under attack" as fact, and uses outright fudging like "unlawful methods," it may influence families with limited resources to make housing plans or choices that are not in their family members' best interests.
"It's a terrifying prospect, but when it comes to autism-appropriate residential options, the landscape is not only bleak, it's about to grow bleaker. Adult autism cases are surging — California's, for example, will quadruple to about 100,000 within 20 years (and that includes just the more severe cases) — but former stalwarts of the developmental disability care system, including group homes and care facilities, are all too often closing or slowly being de-funded. For many autistic and developmentally disabled adults deemed "at risk of institutionalization" due to the severity of their limitations, this leaves only one viable alternative: private residences.
"But now even private residences are under fierce attack. Using convoluted and unlawful methods, the Centers for Medicare and Medicaid Services (CMS) is seeking to deter the development of private disability-friendly residential projects across the country by threatening to label them as "noncompliant" with vague Medicaid rules. Rules, I might add, that CMS lacked the authority to enact in the first place."
Here is an attempt to clarify some of the post's factual errors, and and hopefully diffuse some of the panic that readers may be experiencing.
Parents like me and Ms. Escher have every right to be concerned about the trickiness of ensuring our autistic kids with the highest support needs get the living arrangements they deserve as adults, whether we parents are able to be in their kids’ lives or not.
The official housing policy guidelines can be overwhelming and dense, and many of us need guidance to understand them. But we owe it to our kids to know what their rights really are — because I worry that people read posts like this and become terrified and lose hope, without exploring or understanding the actual options available.
Please know: there are no waiting lists in California for adults who qualify under the state’s guidelines — autistic people who need significant support in at least three areas of their lives. In other states, there are enrollment caps for people with medicaid waivers, but The Department of Justice recently issued a Statement of Interest that this may violate the Americans with Disabilities Act (ADA), so hopefully this will be addressed in other states soon.
So it’s not because the tools to create great options for adults aren’t there. And of course, it is hard work to research, learn, investigate, plan, and ensure our kids are set up with the lives they both want and deserve. The existing policies (Lanterman etc.) that allow for supported decision making and limit institutional settings mean that we have to spend time exploring and evaluating, and in some cases creating, the right environments with our children.
It’s also important that parents understand the services available for adult children to continue living at home. IHSS and other services are set up so that adult children who need full-time support can live at home, should families choose that option -- a valid and desired option for many.
The regulations Ms. Escher is concerned about are not meant to abolish group homes: people who rely on public support can still opt for the arrangement that suits them best. Rather, those regulations are to ensure that group homes aren't essentially institutional in nature – to ensure residents have private rather than shared rooms, for example. (This is important for autistic people who are particularly exuberant and/or have sensory sensitivities that make sharing a bedroom a challenge). There are far too many examples of why institutional-like settings put our beloved family members at risk of neglect and abuse.
Housing options for individuals with complex needs in this state (California) are not dwindling. And while we still need to work on getting cost-of-living increases built in, funding has increased enough to take the edge off in many cases: regional centers were recently the beneficiaries of a bill that is increasing funding to all service providers and facilities. New homes are being built. You can see for yourselves the most recent spate of awards -- in the Golden Gate Regional Center region alone, where my son and I live. Also, there is currently $15 million to help regional center service providers and vendors comply with the newest HBCS regulations.
Also, CMS's jurisdiction over the types of setting where HCBS are used is legitimate as outlined in the statute, and does in fact follow the administrative procedural act – they are not required to go through a separate notice and process comment about enforcing this rule in specific situation. Again, the idea is to ensure that HCBS funds are not used in settings that have "institutional" aspects, in keeping with the new regulations. More details: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/home-and-community-based-setting-requirements.pdf
I realize that Ms. Escher and the people who work with her on housing issues want our children have the best housing options possible when they become adults. But we owe it to those loved ones to make sure we use accurate information during the long and crucial process of securing homes that allow our adults-to-be to not merely live, but thrive.
More California State policy info: