Jason Baker is active in his community, outgoing, and known for his sense of humor. He also has Down syndrome, a seizure disorder, and is non-verbal. Jason’s mother, Suzanne, was caring for her ailing mother-in-law, working full time, dealing with health issues of her own while also providing Jason with the physical and medical care and support he needed throughout the day. She knew a time would come her family would need significant support.
As a pediatric physical therapist. In her career, Suzanne trained staff in various community living arrangements (CLAs) which are homes where individuals with disabilities live together with shared services and staff. CLAs also provide support for each individual’s unique interests and goals. Suzanne knew how CLAs benefit people like her son and families like her own.
She also knew that getting the consolidated Medicaid waiver Jason needed to qualify for a CLA was not easy. The waiver provides individuals with an intellectual disability with resources to help them live more independently, enabling them to access a variety of services that promote community living. In Pennsylvania, there are currently 13,015 people on the consolidated waiver waiting list. Suzanne placed Jason on the waiting list. 13 years later, Jason finally received a waiver.
Kevin is a very social man with a friendly disposition. Kevin is also non-verbal and has severe developmental disabilities which from a very young age, created social barriers between him and other children in his neighborhood.
“When he was young, I remember him looking out of this big window we had at our old house. He would longingly observe the other kids in the neighborhood playing. I knew he needed a community,” said Barb Ginsburg, Kevin’s mother.
Kevin’s mother, a child development specialist, knew he would benefit from peer socialization, appropriate activities and more than just time spent at school and family interactions. She sought out every opportunity to engage Kevin, including equestrian therapy, Special Olympics, respite care, outings, and out-of-home living situations. Most of the services he received were on the opposite side of the city, making things that much more difficult for his family.
Barb stayed optimistic that, one day, Kevin would find the services and living supports he needed to thrive. Kevin was 36 years old when Barb’s friend told her about a new culturally Jewish CLA opening in Squirrel Hill, minutes from where she and her husband lived. She applied for Kevin and it was decided that he would be a good match.
For many years, Terry Steinberg had been an advocate for people like her son, Max. In addition to caring for her son, who has developmental disabilities, she had worked her entire career as a clinical social worker, assisting people with special needs. She had been part of the inclusion movement at places like the Jewish Community Center, synagogues, and other organizations.
She also served on the board of directors at Jewish Residential Services, where she became part of a parent-driven group focused on the needs of Jewish people with disabilities in Squirrel Hill. The group formed a housing task force to assess the needs of this demographic.
The task force determined that there currently was no appropriate community living arrangement option for Jewish people with disabilities in Squirrel Hill. CLAs were only available outside of the city, taking individuals out of their neighborhoods, and far from their community (both secular and religious) and family.
The housing task force presented its findings to the Jewish Residential Services board, which then approved the creation of the CLA. Now funding was needed. Jane Yahr and Barbara Goldberg stepped in.
As nieces of Solomon and Sarah Goldberg and trustees of their Memorial Fund, Jane and Barbara wanted to memorialize their aunt and uncle through funding the CLA. Solomon and Sarah spent decades contributing to the Squirrel Hill community. The new CLA would celebrate Jewish culture with a kosher kitchen, Shabbat meals and holiday celebrations. Three adults with intellectual disabilities would live there with support from Jewish Residential Services and Verland staff, volunteers and their families. The Goldberg House CLA was formed.
November 2019 marks the fifth year that Max, Kevin and Jason have lived in the Goldberg House. “Max, Kevin and Jason are now like siblings. They’re loyal. They protect one another,” said Terry.
Not only do they enrich one another’s lives, they are active and contributing members of the larger community. The men volunteer at places such as Friendship Circle, the Jewish Community Center, and the Squirrel Hill Food pantry just to name a few.
According to Barbara, “They live a very full life.”
The lives of the men’s families have also changed. “After Jason moved into Goldberg House, I noticed I had significantly lower levels of stress,” observed Suzanne.
Terry felt very restricted in what she could do before Max moved into Goldberg House. “Now, Max belongs. When he walks around Squirrel Hill, people know him. It is a dream come true.”
Barbara noted, “I noticed things became less challenging when Kevin moved into Goldberg House. There is support and camaraderie.”
The men’s transition into Goldberg House wasn’t always easy. Max, for example, had always lived at home and was 28 when he moved into Goldberg House.
Throughout the past five years, Max has grown to be more independent and relies less on his parents. Jewish Residential Services and Verland staff work to provide both an independent and supportive atmosphere in which Max can thrive.
Throughout his years at Goldberg House, Max continued to consider his parents’ house his “home”. But recently, after a busy day at his parents’ house, Max was tired and said, “home,” communicating that he wanted to go to his own home. It might have taken five years, but this time, “home” meant his home – the Goldberg House.