Clients of the Office for People with Developmental Disabilities, their families and professionals had a chance Wednesday evening to express concerns with services as part of the agency’s Future Planning Forum. And the OPWDD commissioner, Willow Baer, was there to hear them.
“I think overall it was really positive," said Desere Baker, an education professional and parent of two children with disabilities.
The agency presented on several changes they have made to their programs and services, while stopping between each topic area to ask what can be improved in navigating the system, the services provided and the future of their services.
Baker, during the forum, shared her own experience with getting her son with autism qualified for a Life Plan, which is OPWDD’s guiding document for services for each person in their programs. However, Baker says her son has not been able to access the services on his Life Plan due to a lack of providers.
“I hope OPWDD takes everything that was heard tonight-not just my concerns, but those first-person voices as well," she said. "And one of the things that I had said to OPWDD is: it sounds like on paper they're doing a lot of the right things, right? And so I really want to know, kind of, where does that fall apart?”
Matt Maclean, a local disability activist, shared the barriers to receiving the level of support he needs as someone who has both an Office of Mental Health-qualifying mental health condition and an OPWDD-qualifying disability. He described battling with the two agencies to get services when he qualified for both.
“For over a year, well, actually two years, I have fought and fought and fought to get services, dual services. Well, I don't worry about that anymore because I moved out of [the] Office of Mental Health,” Maclean said. “I moved out, became independent again, and then I realized, OPWDD, your services suck too because I could get groceries and laundry, but now I'm going alone by myself to medical appointments.”
One parent, who did not provide her name, alleged after a series of concerning events in her son’s group home, she has not been able to have him moved to a different residential placement.
“My son, between Christmas and New Year, had a case of neglect substantiated through the Justice Center. He fell in the middle of the night, had to get stitches while we were at his residence," she said. "Someone in the residence died while we were there, and then he came home three days later with a broken hand, and nobody knew what happened.”
Concerns with safety in group homes and options for housing placements for people with developmental disabilities were hot issues.
“So, what I can't put together is OPWDD has said my son qualifies for these services, has high needs, and then the agencies that are funded [by] PPWDD can say ‘no.’ Can say ‘sorry, your kid's too hard. You know, they require too much.’ And then the answer is just no,” the parent continued, explaining it has been nearly eight months of trying to change placement. “I'm a teacher. I understand systems really well. I can't understand this system.”
Shortly after this parent spoke up, activist Mike Rogers, who has cerebral palsy, voiced similar concerns with disabled adults being moved into long-term care due to a lack of housing options for medically-complex clients.
“I think there needs to be a moratorium on reimbursements if the agencies don't start supporting people with higher needs and medical needs. It is disgusting if somebody ends up in a nursing home or in a hospital, because an agency says ‘we won't take them,’ because, like, they have a [tracheostomy] or something that requires medical help,” Rogers said. “You're [OPWDD] getting a lot of money from the system to exist.”
Haley, an autistic woman using an Augmentative and Alternative Communication, or AAC device, to speak, shared that her family and another family had purchased a duplex for her and her friends to eventually live in, but it wasn't a straightforward process.
“I deserve a safe, stable home living with people we know and love. The challenge is not finding families who are willing to do this,” Haley, who did not provide her last name, said. “The challenge is making the system flexible enough to support families who are trying to create these community-based housing options.”
“Self-direction has given me opportunities that previous generations of autistic people never have. I am grateful for that,” Haley shared. She explained that at the same time, there people who seek options outside of the program, which allows clients to self-direct services. But they face barriers.
“When families try to leave self-direction to create innovative shared housing, they often encounter confusing rules, administrative barriers and uncertainty about how to make these homes sustainable,” she added.
Attendees also shared changes they wanted to see in care coordination, which is meant to help clients and their families navigate the system, among other issues.
“It was great to be able to speak to the people that have the power to make the change,” said parent Michelle Bulan.
Bulan spoke about her son, who recently enrolled in Syracuse University’s Inclusive U Program, which is a four-year college program for students with intellectual and developmental disabilities. She said she hadn’t planned to speak, but decided to share her family’s experience getting his college subsidized through the state. She says that OPWDD will only cover two years of his four year program.
“It's heartbreaking in the sense that there are so many people in need, that need services, and it sounds like there's an overarching theme that people are frustrated and not getting the services they need, or they're struggling to get the services they need,” Bulan said about what stuck out to her from the forum. “So, that was tough to listen to, but at the same time, it sounded like the people involved wanted to listen and wanted to hear and are trying to make changes.”
OPWDD also held forums in Manhattan, Westchester, Albany, and Binghamton over the past several weeks.
