It’s been almost a year since my piece “Who Decides Where Autistic Adults Live?” was posted by The Atlantic. Since then, I’ve been asked many times whether I received many negative comments or correspondence following its publication, but honestly, I didn’t. (I received hundreds of times more pushback from an earlier article about taking Jonah to a restaurant). I think it’s because the idea that the intellectually and developmentally disabled should have the same right the rest of us enjoy to choose where and with whom we live and work strikes the vast majority of Americans as common sense. In fact, I think many people with minimal connection to the disability community were shocked that wasn’t the case.  

            But, unfortunately, widespread agreement hasn’t translated into more flexible, expansive policies. Which is why an even more common question I got then and still get with every new article that tackles this subject (such as this most recent opinion piece about shortcomings in federal policy by Jill Escher) is, “What can I do?”

            There should be a simple answer, but there isn’t. Disability policy is crafted by appointed officials that have no direct accountability to voters. They issue edicts without any public involvement and those regulations are not subject to public approval. I’ve written previously about hearings I attended in New Jersey regarding the state transition plan (STP), and how the overwhelmingly negative feedback from disabled individuals, their families and service providers failed to result in significant changes to the draft submitted to the Centers for Medicare and Medicaid Services (CMS). So I understand why it feels sometimes like there is nothing any of us can do.

            But too much is at stake for us to give up. And there have been victories, such as the reversal of New Jersey’s onerous Return Home NJ program, that highlight strategies for effective advocacy. After consulting with my favorite experts, these are the tactics they endorsed:

            Make your opinion known. This is the easiest and most important thing any of us can do. Many parents have little time or money to spare, or – especially parents of children with severe intellectual and developmental disabilities – simply can’t leave their kids long enough to pursue other strategies. However, weighing in on your state transition plan or letting your state developmental disability officials know where you stand is free and easy. And you don’t need to take hours composing a lengthy and detailed analysis; all that’s required is an email letting policy makers know that you support expanding housing and employment options for those with I/DD, not restricting them to a one-size-fits-all model that can’t possibly meet the needs and preferences of the entire disability community. CMS itself has called for “a more outcome-oriented definition of home and community-based settings, rather than one based solely on a setting’s location, geography, or physical characteristics,” which is why the Final Rule doesn’t categorically exclude farmsteads, campuses, sheltered workshops, or any particular setting. Ask your state not to be more restrictive than CMS.

            More than half the states have closed the public comment period on their STPs. (If you want to know where your state is in this process, check out the HCBS Advocacy website, which allows you to search dates and details by state). If your public comment period is open, not only should you comment, but encourage friends and family members to also submit brief comments, giving them a template they can literally copy and paste if they want (feel free to take a couple of sentences from the paragraph above if you like). Many state agencies pay close attention to the number of comments they receive as a way of gauging public opinion.

            If your state’s public comment period is closed, look for other opportunities – for example, my state, Pennsylvania, is currently in the process of renewing its waivers and held several hearings and conference calls to solicit feedback. Should you write directly to state officials or CMS in absence of these opportunities? You may receive a form letter back but honestly, it can’t hurt. Right now, the prevailing narrative is that full inclusion is desired by, and most appropriate for, everyone with I/DD, period. The only thing that’s going to change that narrative is for those who support a broad range of choices to explain why we need them.

            Organize. “Families and self-advocates have power in numbers, especially when they have clear, consistent messages and ‘asks,’” advises Mark Olson, president of LTO Ventures and co-founder of the Coalition for Community Choice, a group fighting to expand housing and employment options for those with I/DD. He points to an example from his home state: “The A-Team in Nevada is doing this very well. It was organized on a model that is working in Wisconsin to address sheltered workshop closure. The A-Team members show up at every hearing, commission and committee meeting in green shirts that say ‘A-Team.’ They also go to Washington and attend conferences.”

            Organizing doesn’t necessarily require you to leave your house. I belong to several Facebook groups: some for autism, some for intellectual disability; some for local families, others with a national membership. I’m also on the mailing lists of groups doing important work in this area, including the Coalition for Community Choice. Critical information is disseminated through these networks, including pending regulations and opportunities to comment. And never underestimate the potential impact you can have just by hitting that “share” button.

            Lobby legislators. State disability officials aren’t elected, but legislators are. And many of them have no idea what severe I/DD looks like or how significantly the options of this vulnerable population are being restricted by new regulations. Lisa Parles, a disability attorney and mother to a severely autistic son, credits this tactic with the reversal of Return Home NJ, a policy that required all intellectually disabled adults in residential programs out of state to be brought back to New Jersey, even though the reason they were placed out of state to begin with was typically because there were no appropriate placements that could support their profound medical and/or behavioral challenges. “New Jersey parents got together via an email chain and started meeting with legislators,” Parles told me. “It took hundreds of hours. But the legislators were incredibly sympathetic – and shocked. They just weren’t aware this was going on.” Previously, the only perspective the legislators had heard was that of inclusion zealots arguing that every single disabled person is best served in small, dispersed community settings – which is, no doubt, an attractive argument. But once they heard about autistic adults who compulsively eloped or were subject to violent rages during which they attacked their caregivers or kicked the windshields out of vans, they understood why offering one solution to a population with a wide range of impairment is doomed to fail. Ultimately, the bill received broad bipartisan support.

            Taking children with autism and/or intellectual disability to meet their state representatives may also be extremely helpful in procuring direct support for them, especially once they age into the world of adult services. In Pennsylvania, there are over 14,000 people on the waiting list for a Consolidated Waiver, the only Medicaid waiver that includes residential services in our state. During this fiscal year, only 200 new waivers were awarded. Influence from legislators can only help overcome these devastating odds.

            Maximize press coverage. “On the same day our Budget Oversight Committee was holding a hearing on Return Home New Jersey, we held a coordinated protest outside the state house,” Lisa Parles told me. “Reporters and cameras covered the protest, and we got a lot of coverage.” Bigger events are more likely to get featured, so coordinate your efforts. If you’re planning on taking your severely autistic teen to meet your state representative, put out a call on Facebook to your local autism groups to join you. If hundreds of individuals with I/DD and their families descend on the state house, I guarantee reporters will notice. And don’t forget to share the resulting stories, so media outlets learn these issues are important to a wide audience.

            Consider a lawsuit. This of course potentially requires large amounts of time and money (or pro bono attorneys), but many experts I’ve spoken with believe it will take a lawsuit to reverse states’ most restrictive regulations. It would require a person with standing – someone with I/DD, for example, or the family of a more severely disabled individual under guardianship – who was prohibited from using HCBS waiver dollars for a desired placement because of that setting’s size or location to sue the state.

It’s hard to imagine how such refusals aren’t examples of blatant discrimination. Consider the outrage that would result if seniors were told they would lose their Social Security unless they moved out of “segregated” and “isolated” retirement communities, or if welfare recipients were forbidden from renting apartments in buildings in which more than 25% of the other residents received similar benefits. Yet similar regulations are in effect right now for one minority group and one minority group only: the developmentally disabled. I know I’m not the only one who can’t wait for these policies to face judicial scrutiny.

            If other advocacy strategies have worked for you, please comment and share them. We all need to work together to fight the forces that are dramatically restricting the housing and employment options available to the intellectually and developmentally disabled.

About the Author

Amy S.F. Lutz

Amy S.F. Lutz is the author of Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children, and is the president of the EASI Foundation.

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