This is the story of one family that moved to Lexington with their son Zach when he was a second grader with complex needs but no clear diagnosis. He is now 32.
In Part 1 of Zach’s story, we learned that after winding his way through the complex medical, legal and educational system for kids with disabilities, Zach was finally diagnosed with Smith-Magenis Syndrome, a rare genetic disorder that affects both learning and behavior, when he was 15 years old. The diagnosis helped the family find an appropriate residential school for Zach, and finally, some stability and calm. Public schools are required by state and federal law to provide free and appropriate education to all residents between the ages of 3 and 22. In Part 2, we’ll learn what happens when Zach ages out of that system. (Zach himself did not wish to be interviewed, but he agreed to let his family tell his story).
In the three years before Zach Kon reached his 22nd birthday – the date when he aged out of Lexington school system – his parents talked a lot about his future — with him, his brother Max, their education coordinators, and other special needs parents.
“We had meetings for several years about possibilities,” his mother Leah Baigell says. “Quality of life — for Zach and for us — was a big issue, along with location, what programs were available, human rights issues, and money.”
Keeping an adult kid with needs like Zach’s at home when they age out of district care can require permanent part-time or live-in help. “We didn’t think those options would have worked for us,” Leah explains. After years of cycling through different schools and programs, and months spent in the psychiatric unit of a local hospital, Zach had finally found his way to the Devereaux School, a residential program for teenagers with serious developmental and behavioral challenges, where he lived from the ages of 15-19. “One of our coordinators told me when Zach was in and out of the hospital, ‘You’re running an ICU and that is not sustainable.’ When you’re living that life, you don’t have the perspective to fully understand how it’s working or not, for you or for your kid. You can develop patterns that are not always helpful.”
In the past, many American families quietly sent special-needs children away to out-of-town residential institutions, where they often remained for the rest of their lives. At 23, Rosemary Kennedy, sister to John, Robert and Ted, was sent to an institution in Wisconsin. Some of these places, such as the Fernald School off Trapelo Road in Waltham, became infamous for abuse. Founded in 1848, the Fernald School was the Western hemisphere’s oldest publicly funded institution housing people with developmental disabilities. Over its history, its leaders advocated eugenics, were accused of physical abuse of residents, and were proved to have conducted research and medical experiments on residents without their consent.
That model of care, for the most part, no longer exists. Fernald and most other institutions like it were closed, creating a void for special-needs adults that has been only partially filled by small-group homes.
Massachusetts, like every other state, has long waiting lists for such housing and provides funding according to three categories of priority. Zach qualified as Priority One because, though he didn’t have high medical needs, he had high behavioral ones. He was, at 22, not considered safe to himself or to others and required more care than his family could provide. He was therefore eligible for full funding to live in a group home. The challenge was to match him with an appropriate one.
The state Department of Developmental Services (DDS) finally located both a residence and a day program for Zach. “I worked with them for years to make this happen,” Leah says, “and we felt like we had found his forever place.” The housing was run by a not-for-profit agency called TILL (Towards Independent Living and Learning), and the day program by Nupath. From May 2014 to March 2018 — almost four years — he lived a couple of miles away from home, in a house on Marrett Road, near Lexington’s Old Rez. In advance of moving in, Zach got to meet his housemates and the staff and to pick out his furniture. “From the outside it looks like any other house,” Leah notes. “But inside, it’s got five single bedrooms for five residents, with two full bathrooms, a bedroom for overnight staff and an office. It was just two and a half miles from our house and he was familiar with the neighborhood. We could take him out to dinner and he could come home whenever we had family events.”
It took Zach a while to settle into his new home. His residential school had been highly structured and employed a staff of longstanding teachers and therapists. The goals were clear and measurable. All facilities and staffers were in the same familiar place.
“When you leave the under-22 world, each type of staff — for where you sleep, where you work, transportation, for distributing medication — is different,” says Leah. “It can be anxiety-inducing for residents who have a complicated schedule.” On weekdays, a rotating staff (sometimes up to a dozen people) made sure Zach got out of bed, brushed his teeth, got dressed, ate breakfast, and boarded a van to his day program. Both getting in and out of cars and sitting still had always been difficult for Zach. His explosive episodes continued — small ones every day and bigger ones periodically.
“The residents are adults who have human rights,” notes Leah. “The staff can’t force them to get into a van or take their medication or to observe a good diet or good hygiene. There are house rules around eating. You’re not supposed to raid the kitchen, but you can come in anytime and get what you want. You can’t ever go into someone else’s room but can use the public spaces as much as you like.”
In some ways, the group house resembled any other communal situation, with a mix of personalities among both staff and residents. Although the staffers are managed by accredited supervisors, wages are low and many of the staffers are young and inexperienced. “We thought some were very good; others not so good.” says Leah. “The job is difficult. Because the residents are so different, they have to create activities designed for what the least functional person can do, which is frustrating for the others. Also, there are the inevitable instances of rapport and personality clashes and complexities between residents and between residents and staff.”
Zach’s group was made up of three men and two women, all 22 years old — but that was almost their only feature in common. The women both had mobility and vision issues; the other men had autism spectrum disorder. Their interest in social interaction varied widely.
During the day, they attended different day programs. Zach attended a “sheltered workshop” in which special needs adults work in a carefully designed space including a sewing workshop and a store; others worked in crafts or food prep programs. Zach helped run the computer workshop and also did janitorial work, sweeping and emptying out the trash cans.
“The organizations are designed to train toward greater independence, but the reality of it is that most of these kids need one-on-one supervision,” Zach’s father Henry explains. “It’s not easy. Despite the best intentions of everyone involved, the residents can’t work a cash register or catalog alphabetically.”
On weekends, the staff organized activities like shopping, sports, and entertainment. “They are getting funded to give them ‘a meaningful day’ and get them to be independent, but what kind of activities can you get them to do? The house basement had a video game system and a TV, but as the internet offered more options, many of the residents used electronics during leisure time.”
Electronics had long been a lifeline for Zach. His father owned a computer early on and entertained both his toddlers by putting them on his lap to play educational games. The first iPod came out in 2001, when Zach was nine, and his parents got him one. He became interested in music — classic rock, then rap — and later, at the Guild School, worked with a music therapist to write his own songs. His parents bought him a flip phone to use while he was being trained to travel alone, and as the decade went on, newer technologies like the iPhone. Because Zach was so interested in people, always wanting to hear their thoughts and stories, social media was in some ways a godsend.
“He loved being online,” Henry recalls. “I think under other circumstances, he’d make a great hacker. He’s drawn to the technology.” Zach liked to read about celebrities, and Leah recalls him researching subjects that interested him — the best deals for appliances she was interested in buying, museums, travel destinations.
He also wanted to figure out how to get rich. “Scammers would see that they had a mark,” says Henry. “They would instruct him on how to open a bank account and propose deals, emailing him, ‘I’m Justin Bieber’s Manager’ or ‘I’m Drake’s manager’ and ‘I’ll send a car to pick you up.’ Zach believed them; then we had to block them and Zach would get pissed off at us because we were blocking his dreams.” There were times when he tried opening credit card accounts and when someone tried to blackmail him. Leah and Henry had to call the cops a couple of times; they talked to him and tried to explain that this was serious and not just his parents being jerks.
When the family went to visit relatives in New York or took a vacation, Zach could almost pass for neurotypical. “He was, like most people, much less trouble when he was in a good mood and with people who liked him,” Leah notes. “You’d just have to remember to plan things and plant the seeds for them beforehand — do you want to go to the beach? Do you want to get ice cream? Even pleasant prospects create anxiety for him.”
In some ways, he was a model citizen, interested in social action. His parents remember him watching a PBS documentary on Frederick Douglass and becoming engaged in political advocacy. He always participates in Temple Isaiah’s Mitzvah Day — a day of community service — and Project Ezra, which serves Christmas dinner to local families in need on Christmas Eve. He was excited to vote when he turned eighteen and has voted in every election since, spending months researching the candidates and issues, reading political platforms and discussing how he wants to vote. Then his polling place was changed and Zach had a meltdown. Since then, he votes by absentee ballot. He is active in PRISMS (Parents & Researchers Interested in Smith-Magenis Syndrome) and likes to speak at its biannual conference.
At the same time, Henry says, “This is still a person who’ll put his fist through a windshield and, after the fact, he is shocked at the damage he incurred and is not able to process what he has done. He cannot analyze what led to the event. He’d say, ‘let’s not dwell on the past’.”
In 2016, the state legislature introduced a major change to the special-needs environment by passing a law ending the “sheltered workshop” model in favor of an “integrated work program.” The new model mainstreamed residents into ordinary workplaces in the company of a job coach. Zach worked at a gas station stocking shelves. He loved putting on the uniform. Then he worked at Wegmans. “They have a great program,” Leah says. “Zach liked being part of the community, as well as helping people take groceries back to their cars.” But, Leah explains, “he appeared more competent than he was, and his supervisors began forgetting that he was not capable of doing more. They talked to him about his schedule instead of talking to his job coach, and it got to be too much. One day he decided not to go back. And that was the end.”
Then in March 2018, Zach’s four years at the house on Marrett Road ended, too. “When he had melt-downs,” says Henry, “he tended to break things: his glasses, his iPad, his iPhone. Again, he was not interested in analyzing what happened.” The last straw at the group house was that a long-standing animosity with a fellow resident blew up. Zach was immediately moved to another TILL house in Burlington, and continued to attend his work program at Nupath. Every afternoon at 3, he returned to a shared space with four elderly men who had mobility issues and minimal language ability, who “couldn’t use the bathroom or take a shower on their own, so there was no shower curtain,” says Leah.
“We spent a year looking for better housing when DDS got a call about a farm program,” Leah says. From March 2019 to March 2020, Zach was part of Shared Living Collaborative (SLC), an organization that aims to provide “self-directed, person-centered, non-stigmatizing, holistic supports” for people with disabilities. “It’s a very innovative program,” says Henry, that trains providers to host people with disabilities in their homes. Zach lived in a home with one other resident and one supervisory adult. During the day, he worked on a horse farm and loved it. He fed and mucked out the goats, gathered eggs, swept out the administration building, cleaned the stalls, had horseback riding lessons. But he still had meltdowns that sometimes necessitated going to the ER. At one point he had a serious altercation with his provider and was moved into one of two side-by-side apartments near the farm, with staff living in one and Zach in the other. He continued working but had six more emergency hospitalizations.
Then, in March of 2020, when Zach was 27, COVID hit the Boston area and Zach returned home. For the next four years, Zach lived in his childhood bedroom with his parents. Because of the pandemic, Henry and Leah were working from home. “Our immediate reaction, like everyone else we knew, was — it’s just going to be a couple of weeks,” she remembers. “But instead, for about a year, life stopped. He’s always interested in making money, so I created activities for him to do, like raking leaves for neighbors and collecting empty bottles and taking them to the supermarket. He’s interested in photography, so he took pictures and we made and sold greeting cards. Zach and I would also go out for long drives and walks, go to stores to look for things we needed at home. He was always game for that kind of adventure. And we kept working with our DDS caseworker to find housing for him.”
Henry built himself a sound-proof office in the basement where he could work without hearing Zach bang around the house. “There was lots of plastering and carpentry work required to fix holes in the walls,” he says. For a few months, Leah drove up to the farm a couple of times a week so Zach could work. She would park in a nearby lot and do her own work while she waited. For the past ten years, she has been working part-time as a parent mentor at the UMass Chan Medical School Sibling Support Demonstration Project, facilitating support groups for parents and caregivers of children and adolescents with behavioral challenges. She also continues her volunteer work at Temple Isaiah and at PRISMS, the SMS organization.
It took three more years before DDS found an organization to provide Zach’s next group home, where he lives now. It’s located in Waltham and run by the Guild for Human Services in Concord. His housemates are five young men in their 30s who all moved in at the same time. This transition, like all the others, was difficult, but the family feels lucky that he is in a safe place that’s not far away. He has remained gregarious and enjoys relationships with the staffers and residents he likes. Three of his housemates go to day programs, but Zach and one another man don’t, because DDS hasn’t found one that will accept them. Electronics continue to play a large role in his life. A behavioral therapist reviewed his tech and set up a special plan for Zach that gives his parents control and access to his server.
Leah drops in once a week to help Zach clean his room or take him shopping or to Temple Isaiah, where both continue to volunteer for social action projects. The two are working on the presentation he is giving at the SMS conference this summer. He’s also still creating and selling his photographic note cards through a program that helps adults with disabilities create micro-businesses. Henry takes him out to dinner, bowling or to play pool or go to concerts. The staff offers opportunities to go to the gym, but Zach often opts to stay home and play video games.
Zach turned 32 this month. Leah and Henry are both now 63. They are in excellent health, but already grappling with the question of what happens to Zach when they are no longer able to care for him. His older brother Max, who lives nearby with his wife and two young daughters, will become Zach’s legal guardian. They hope to have put a support system in place for all eventualities, including another pandemic.
Given the givens, Henry has come to see their family as lucky. “Over time we realized that there are things you can’t change. You’re locked into this lifelong embrace,” Henry says. “We’re lucky because Zach has a place to live, unlike many parents with special-needs adult children. Leah had the skills and energy to learn how to work the system and get what we needed. It took — and continues to take — an extraordinary amount of time and research. The squeaky wheel gets the oil at some level.”
Leah, too, tends to see herself as fortunate. “Because of my husband’s salary, I had the financial resources to be able to stay home and manage my son’s life,” she says. “Almost every time I’m put on hold by a hospital or an agency or some person I need to get information from, I imagine what it must be like to be an immigrant who doesn’t speak the language very well, or someone who’s holding down two jobs. What do you do when you’re put on hold for half an hour and have to get back to your shift? How do you understand the intricacies of relationships with coordinators and government regulators? I had the support to set up a way of life that could accommodate Zach for the last 30 years and hopefully for the rest of his life,” Leah says. “Imagine the people who can’t.”
Zach still calls most mornings beginning at 5:00 a.m. Leah still needs to drive him to doctor and therapy appointments. At 32 years old, he still has tantrums, and still needs to be prodded to brush his teeth. “This is a daily battle,” Leah says. “It is unending.”
A short list of preliminary helpful resources:
Massachusetts Department of Developmental Services
Special Education Parent Advisory Councils (SEPACS): Every district in the state has its own SEPAC. Lexington’s SEPAC website can be found at lexsepta.org
Parent Professional Advocacy League PPAL.NET
The Association for Autism and Neurodiversity AANE.ORG
PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.
The National Alliance on Mental Illness (NAMI) is a United States-based nonprofit organization originally founded as a grassroots group by family members of people diagnosed with mental illness. In Lexington visit namicentralmiddlesex.org
This article about Zach is an amazing story of the struggles entailed in finding the help your child with disabilities needs as you are faced with finding your way through the labyrinth of public services that will be necessary to meet your child’s particular situation. His mom deserves the Medal of Honor for her hard work over these 32 years to find programs and placements for Zach. His father has also been a constant support for his son. May God bless this family and help them to continue to be at Zach’s side with all the love that they give so wholeheartedly.
This has been an excellent, informative set of articles. Thanks for writing and publishing it and educating us about the family. All the best to Leah, Henry, Zach and Max.
I enjoyed reading both the articles. What a story, it’s your family story and I love the attitude that Leah and Henry have, it’s wonderful. Leah is a gem, fighting for everything! “The squeaky wheel” does make a huge difference and creates so much impact! I like the comment of how lucky you were financially etc and that you recognize how other families that may have a language barrier etc how their path to working the system would be different. You are helping others by advocating continuously! Keep up the fantastic work you are doing for your family and others!!