Nonprofits struggle to support families of disabled children, adults

Posted 5/26/20

SPIN (Special People in Northeast) client Tyrone Cornish enjoys looking at a magazine in one of the nonprofit’s residential community homes in Mt. Airy thanks to the assistance of his Direct …

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Nonprofits struggle to support families of disabled children, adults

SPIN (Special People in Northeast) client Tyrone Cornish enjoys looking at a magazine in one of the nonprofit’s residential community homes in Mt. Airy thanks to the assistance of his Direct Support Professionals Sandra Kelson (left) and Sandra Clement. (Photo courtesy of SPIN).

by Sue Ann Rybak

S.P.I.N. (Special People in Northeast), a provider of support services for children and adults with autism, intellectual and developmental disabilities, is just one of the many nonprofits struggling to keep its doors open during the pandemic. According to its website, the organization provides for more than 3,500 people in the Lehigh Valley and Southeastern Pennsylvania.

In 2009, SPIN took over services offered by East Mt. Airy Community Living, which was founded in 1972 by East Mt. Airy Neighbors Association. It has several residential group homes in northwest Philadelphia.

“Our services not only sustain lives, but we have saved lives," said Kathleen Brown McHale, president, and C.E.O. of SPIN, “because there was a time when people with disabilities lived in more congregated settings or institutional settings.”

She said recent data shows that at some congregated sites, 40 percent of the population has contracted the virus. She added that the nonprofit never has more than three clients living in a group home at one time.

According to the Pennsylvania Department of Human Services Office of Developmental Programs COVID-19 Report, as of May 13, 2020, 68 individuals with intellectual disabilities or autism have died related to COVID-19 in Southeastern Pennsylvania. Link

McHale said 14 out of 255 of their clients in group homes did test positive for the virus, and recently two died. Roughly 30 of her staff have tested positive for COVID-19.

“The people we support in the community are very vulnerable,” she said.

She said their clients do not just have intellectual disabilities and autism. SPIN also provides services to the “elderly" and people who have “severe and underlying medical conditions,” but they are "not a medical provider.”

“We have people who have significant behavioral challenges and, of course, neurological diagnoses,” she said. “Unfortunately, all of our community services, such as our employment services, day services, and behavioral health services and outpatient services for children with autism, are closed.”

Although, McHale added the nonprofit is trying to provide some of those services remotely.

She said, "No matter what happens," their group homes must remain open for the 255 clients in their care, "and that means treating clients with COVID-19 safely."

"In the Commonwealth, there are thousands of people who need these services, and direct support professionals (D.S.P.) are on the frontline doing this essential work," she said. "They are supporting people in very close proximity. Direct Support Professionals are helping people with personal hygiene, helping them to eat, with a feeding tube, and communicating with the client's health services team."

She said before the pandemic, SPIN was severely underfunded, but now their "costs have gone up" because their revenues have decreased due to a lack of services such as its day program.

"We have never been able to pay our direct support professionals (DSPs) what I consider a living wage. Our direct support professionals are earning $13 to $14 an hour and putting their lives on the line."

It's why SPIN decided to pay their DSPs 50 percent more the first two weeks of the stay-at-home order and then 10 percent more after that.

“If staff work with somebody who does have COVID-19, which 14 clients did, then we gave them a 100 percent increase because the staff was not going to work," she said. “Of course, then they work with full physical protection equipment – N-95 masks, shields, gowns, and gloves.

 “We need to get more funding for services so we can pay our staff better to do this life-sustaining work. Right now, we are doing it every day, but the question 'Is can we survive?' Are my staff going to continue to show up? They love what they do, but the stakes are high now.

Andrea Temple. whose son Daniel, 34, lives in SPIN's residential housing, said she also worries about the future of nonprofits like SPIN and their workers. She said her son who has intellectual disabilities and autism has been very depressed since the stay-at-home order was put into place.

“He used to attend SPIN's day program,” said Temple, 59, of Huntingdon Valley. “He loves to be on the go. He was getting art therapy, massage therapy, and every day he would go on some outing like to Rita's. Now, he cries all the time and is convinced that he has COVID-19 and is going into the hospital. He watches the news, but he doesn't really understand what's going on.

"Dan has no life skills – no safety skills. He can't read or write. He can't take care of himself. He can't dress for the weather or brush his teeth. Dan used to come home to visit us on Sundays unless we were on vacation. We have never been away from him for longer than a week. I had a little bit of a meltdown. If we take him home, it's for the duration, and what is the duration? My husband Geoffrey is a physician and I work in healthcare so we would be exposing him to the virus. I knew I wouldn't be able to work if he came home. It was really hard for us not to bring him home."

She said that SPIN has set up video calls that have helped to alleviate Dan's anxiety and help them feel connected.

Montgomery County resident Terri DelloBuono, 57, said initially she was worried about her brother Dan Cappio, 55, who has Downs Syndrome, being exposed to COVID-19 until she reached out to Frank Brown, Corporate Officer of Residential Services at SPIN.

“He gave me a complete breakdown of exactly how they are handling it,” she said. "If someone is diagnosed, they keep us informed," she said. "They have been very good about being open and honest. No one is allowed in except for the people who take care of him."

“When Dan first became a resident, we were afraid that once he came home, he wouldn't want to go back," she said. "But he didn't want to see us on the weekend. As much as I wanted my feelings to be hurt, I was happy because I knew he was happy there. And I knew that would make my father happy because that's what he asked me to do – Make sure Dan is taken care of. It was such a miracle.”

Now, if Dan were forced to come home DelloBuono doesn't know what she would do.

“Dan has been diagnosed with dementia,” she said. "He has to be watched full-time because he might get up and walk out during the night.”

“In my opinion, the people who care for the residents of SPIN and in their autism care and their classes are also heroes on the frontline,” said DelloBuono, who is a controller for a law firm. “A lot of them are scared to go to work. My daughter is a nurse. It's scary. I have to say I have not noticed a difference in his care.”

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