This is a book review of Micki Edelsohn's "Mom with a Megaphone" posted with permission from the National Council on Severe Autism. I couldn't have said it better myself.
[Now available on Amazon!]
********************
The I/DD Homes that Micki Built
February 6, 2023
Review: Mom With A Megaphone: My 50-Year Journey With My Son With An Intellectual Disability, by Micki Edelsohn, 2022
By Jill Escher
If Joan Rivers and Mother Theresa had a baby, you might end up with Micki Edelsohn.
Edelsohn, a talkative dynamo of nearly 80 years of age, is a long-time leader in the field of housing for adults with intellectual and developmental disabilities (I/DD), particularly in Delaware where her all-volunteer Homes for Life Foundation has created 25 beautiful group homes and several condos, housing a total of 104 very lucky residents.
Now in her “twilight years,” as she puts it, this tireless do-gooder felt compelled to tell the story of her life’s work in order that the rest of us can pick up where she left off. Her book, Mom With A Megaphone, portrays a community housing pioneer consumed with worry about an increasingly bleak policy landscape. “We find ourselves in a perilous time for those who are most impaired and lack capacity,” she writes. “Where will they live and how will they spend their days?” She says the most vulnerable people in the disability community are being left out of disability policy decision-making.
I’ve been in this field long enough to see two kinds of disability advocates. In Camp One you find those who build, who create, who roll up their sleeves to constructively solve real-life problems and then pose with joy and a shovel at a groundbreaking. Here you will find Micki and other resourceful folk.
But then there’s Camp Two — those who bloviate, inveigh, criticize, obstruct, spout ideological catch-phrases, and … do nothing to actually solve problems. The regrettable trend in disability advocacy over the past decade has been veritable warfare by a righteous, heavily funded Camp Two against a scrappy but exhausted Camp One, imperiling the future for adults who need supported housing.
We see this drama play out across the arc of Edelsohn’s story.
We meet a young Micki who is so full of chutzpah that she launches over a fence to surreptitiously touch presidential candidate John Kennedy after he gives a speech. “If I’d done that today I would have been arrested, shot or tackled,” she reflects. Life was overwhelmingly normal. She goes to college, marries a nice Jewish doctor, has one son in 1968, and along the way develops an infatuation with American antiques.
Then in 1972, her second son Robert is born following a difficult breech delivery. Later, in the hospital nursery he stops breathing, and despite reassurances from staff, Micki instinctively knew something was wrong. In the following years Micki and her husband Lanny could see he was not developing normally, that he struggled to do things that came easily to his peers. As he entered school, “no one could really tell us what he needed.”
But with the passage of the Education of Handicapped Children Act (now IDEA), Robert’s was the first generation to benefit from special education from preschool to age 21, and he certainly makes progress, and learns to read. At age 13, he takes to the lectern for a modified Bar Mitzvah. But it was clear that he would always need supervision and support. They loved and accepted Robert “for who he was, not who we had hoped he would be.”
As Robert approaches adulthood, Micki begins to contemplate his adult living options, and ponders how she might go about creating a group home, having no experience but plenty of curiosity. That vague desire quickly turned into something much bigger. After schmoozing her way around Delaware, she met like-minded parents and generous donors, and before long her Homes for Life (HFL) Foundation was born.
By October 1990, four women moved into the first Homes for Life home. A partnership with Delaware’s MBNA bank proved essential to fundraising for the early homes, and the bank also provided employment for many HFL residents. This remarkable partnership, which presaged many of today's inclusive employment programs, included towel service at the corporate gym, helping manage MBNA’s mailing lists, and even silk-screening shirts.
Staffed only by volunteers, HFL was on a mission to create more and more and more homes, finding many individuals and foundations willing to contribute. Micki spent hours each day fundraising, working with the state DD agency and developers, and designing interiors to meet unique needs of the individuals. More homes were always needed, and after Micki created them — without government funding mind you — HFL deeded the homes to the Arc of Delaware, and debt-free! Micki worked so much magic she should have been crowned the fairy godmother of Delaware disability housing. Then the residents, who were handpicked by the state DD agency and not HFL, moved in and received staff support via Medicaid Home and Community Based Services (HCBS) waivers, a funding instrument for services provided in non-institutional settings.
Thanks to the HFL team’s fundraising and organizational prowess it was an astonishingly productive model. Despite some setbacks, such as opposition from neighbors who opposed group homes in their neighborhood, it went on to develop 25 homes, “representing 100 men and women with significant intellectual disabilities who now had a home for life,” Micki writes. “The satisfaction was hard to describe. The future looked promising.” HFL was celebrated, Micki received honors and awards for her innovative work.
In 2011 she was appointed to Obama’s President’s Committee for People with Intellectual Disability (PCPID), but inside the nation’s capitol she sensed a change. The mood was no longer one of constructive collaboration, but instead accusation, inflexibility, and dogma. Self-advocacy groups such as ASAN and SABE “wanted to define the meaning of community” in a narrow, one-size-fits-all way, a way that didn’t take into account the limitations, desires and needs of a wide swath of the I/DD population. Micki was appalled to see the Arc of the US even attacking its own affiliate for, gasp!, developing I/DD-friendly housing in Florida. Feel-good mantras like “dignity of risk” were tossed about to justify de-funding residential programs, sending a sinister message that disregarded the well-being of those with impaired judgment and cognition, and Micki recoiled. “When the consequences of risk taking are serious,” she writes, “there is no dignity.” Bingo.
The negativism that now predominated in the lavishly funded network of state DD Councils and other arms of the federally funded DD octopus like the Protection and Advocacy systems, and the Association of University Centers, was having harsh repercussions on the ground. Homes inhabited by adults with I/DD were prohibited from being in proximity to each other, because that was supposedly “too congregate.” Everything was suspect. Preposterously, advocates referred to HFL homes as “mini-institutions” as if a plush and spacious community home of four was akin to a seething Willowbrook housing 6,000. HFL homes went from being widely celebrated models that provided desperately needed “homes for life,” to suddenly “controversial.” One activist decried them as “non-inclusive" group homes (what did she want? to evict half the adults and replace them with Joe Schmoes instead? and how would that help?) The new Medicaid HCBS “Settings Rule” that disfavored disability-friendly options put projects serving those with the most severe disabilities in the crosshairs.
The real motivation behind the new inquisition, Micki contends, was not truly ideology but instead cost saving. Federal spending on HCBS for adults with I/DD was skyrocketing, and somehow it had to be contained. By limiting housing availability, a greater proportion of parents and families could do the heavy lifting instead.
While Micki has no qualms about cost savings generally, she’s a realist. She is mostly worried about families and aging parents who cannot care for their loved ones. And she knows that in the end, a “setting” has little to do with the HCBS costs of care: “To put it bluntly, my son Robert will always need the same level of support whether he lives in a group home, intermediate care facility, intentional community, farmstead, condo with us in his natural family’s home, or in a tent in the backyard.”
Micki rightly laments that Medicaid HCBS expenditures were supposed to be based on “person centered planning,” but lost in the heated debates over “settings” was any concern for the individual’s wants and needs. “The debate always seems to center on the location of the home, or the number of residents in the home or neighborhood,” she says, “not on the quality of care given.”
A grassroots effort that Micki helped form, called Families Speaking Up!, was one of the tiny Davids fighting a Goliath of taxpayer-funded DD agencies that opposed developments serving the most severely impaired, “making it an unfair fight.” Missiles were launched over every little thing. After Ford Foundation grant money supported a report by HFL about intentional communities serving adults with I/DD, a swarm of advocates complained to Ford, part of a “cancel” tactic to disempower Camp One.
Things became truly “surreal,” she says. For example, on a Biden campaign Disability Platform call, a participant was condemned as “ableist” for simply using the word “severe.” The justice warriors squandered time and energy on breathtakingly trivial matters, all while HFL housing creation ground to a halt, denying dreams to disabled Delawareans. The book closes with a return to son Robert, who now turns 50 and is now a happy man with many friends and activities. He leads a full life, but as his parents age his future is far from clear. The book also features a large amount of Appendix material, the first of which I admit is a 2016 essay by yours truly called “The Federal Government’s Quiet War Against Adults with Autism,” about dangers posed by the HCBS Settings Rule.
“Mom With A Megaphone” is ultimately a call for civility — and moreover, for appropriate services for all adults with I/DD. Micki sees immense diversity in the population, needing a huge array of options, and is sickened by “an unfortunate, senseless divide” that holds back progress millions of people so desperately need.
Jill Escher is president of the National Council on Severe Autism.
To receive a copy: Mom With A Megaphone is not currently available on Amazon or online. If you would like to receive a copy, please email NCSA at info@ncsautism.org and we will get back to you with ordering information. We will also post online ordering information when that is available.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.
****************
P.S. My essay, "Danny at 40: Surviving the Inclusion Delusion" appears in the appendix of "Mom with a Megaphone".
