Their family and friends affectionally call them “The Phoenixville Five,” a group of men and women with severe autism who are living in their own homes, volunteering and working in the quaint Pennsylvania town. Their lives soon may be in total upheaval. The state-funded services that support them in their daily routines are slated to be slashed by April 1st.
Once a week, 39-year-old Elisha Rothman volunteers at Chapel Cabin Shop located in Valley Forge National Historical Park. She mops the floors and helps clean up. Store manager Pamela Deuel loves Elisha.
“We are very blessed to have Elisha, and next week is our anniversary, she has been here eleven years,” said Deuel. “She is like a daughter to me!”
Elisha also has a paying job at Valley Forge Christian College’s cafeteria. She enjoys going shopping and out to eat. Wherever she goes, a trained service provider accompanies her. She has one-on-one support all day that enables her to live in a small house that she shares with 41-year-old Becky Leonard, who has Autism as well.
Becky’s parents, Joe and Ginny Leonard and Elisha’s mother Marsha Rothman bought the house together. The Leonards also have a son who has severe autism, Matthew, who is 44. He shares and co-owns a house in Phoenixville with two other men who have Autism.
The Leonards spent years working their way through a maze of federal and state funding options, to patch together a cohesive support system for their son and daughter. Joe Leonard says staff supports their kids in every aspect of life.
“Whether it’s vacuuming the floors and making meals, whether it’s going to the doctor, or to a job – it’s a service that geared toward enabling a person to live in the community successfully and safely,” said Leonard.
Before this arrangement started over ten years ago, the kids were living at home. After high school they had nowhere to go, nothing to do.
Destructive behaviors flared up, hitting themselves, banging their heads, outbursts, screaming. Elisha spent time at a sheltered workshop, assembling basic items alongside others with disabilities. Her mother Marsha Rothman says she was bored. “There was a lot of downtime, because they didn’t have the business, and sometimes she could just be sitting for hours,” she said.
Since moving out of their parents’ homes, all five adults living in the two houses have flourished. They have developed steady routines, and have found activities they enjoy. But Pennsylvania’s funding for their support system, so-called “community integration services” may be severely cut back within the next few weeks. Under new rules, service hours would be reduced from an “as needed basis” to 12 hours a week for only up to 13 weeks.
Joe Leonard says the potential cuts threaten his children’s way of life, and have cast the families into despair.
“One of the thing that haunts all parents of folks with severe disabilities, is their mortality and what’s going to happen when I am no longer around,” said Leonard, who is almost 72 years old. “A major motivation in creating these homes, is so that we can die in peace.”
Elisha’s mom Marsha Rothman says the worry over the future has increased her health problems: “I suffer from anxiety, and it’s just worse. I do take medication for it, but Elisha just looms large in my mind.”
One option they contemplate is for their kids to come home.
Rothman said she can’t even envision that setting. “Elisha is so different now, so much more mature, has come such a long way, what would happen is, she would just revert back to the way she was before she moved here,” she said.
Joe Leonard said that Matthew would be sitting on the couch, rocking and banging his head, and Becky would sit in her room screaming if they were to come back home.
Another option might be a group home, which costs the state about the same as paying for the help they get now about $150,000 a year. But Ginny Leonard says group homes tend not to work for people with Autism: “They have a very hard time with sounds and stimuli and things going on in the environment, it’s very hard for them to cope with environments where there’s a lot of people in a room, or in a house together,” she said.
Another option is moving to a psychiatric hospital, which doesn’t appeal to the families and would cost the state close to $250,000 a year.
Several parents have joined a lawsuit filed by the Disability Rights Network to force the Pennsylvania department of Welfare to revoke the planned service cuts. “We are trying to negotiate with the department of public welfare to make changes to the cuts that they have made in a way that are not so detrimental to the individuals that are going to be affected,” said Kelly Darr, the network’s legal director.
The department of welfare will not comment on the cuts because of the pending lawsuit.
Frank Unger has joined the suit. His son Michael has shared a house with the Leonards’ son for over ten years. “We all know that he is never going to get better, but we know that he has a life, and that he enjoys it, and that he can smile now, and that he is not hospitalized.”
The Phoenixville Five face an uncertain future. If the lawsuit doesn’t prevail, on April first, they will likely have to leave their homes.