Enabling and empowering: Absent state support, local agencies fill the gap for people with disabilities
Frederick News-Post - 9/17/2017
Sept. 17--Michelle Sclater fully anticipated the responsibilities that caring for her newborn son, Jake, would entail.
She didn't expect to still be changing his diaper, feeding him and trying to decipher his sounds and nonverbal cues 14 years later. Jake has Angelman syndrome, a rare neuro-genetic disorder that causes developmental delays, balance problems, speech difficulty and seizures. He also suffers from a birth defect known as agenesis of the corpus callosum, which means he was born without the part of his brain that connects the two hemispheres.
As a result of these two rare but completely unrelated diagnoses, Jake cannot talk or communicate beyond pointing and making sounds. He has learned to walk with a walker, but still needs to be lifted or carried sometimes. He requires constant care and supervision, and will for the rest of his life.
His conditions also necessitate an array of medical services and treatments that are costly and require traveling outside the state to specialists.
When Jake was 3, Sclater applied for financial assistance for caregiving and treatment through the Maryland Department of Health'sDevelopmental Disabilities Administration. She didn't expect her request would be met soon; she'd heard about the long waiting lists for services.
But Sclater was again surprised when in July, her 11-year wait had ended. Jake was receiving a waiver, which would cover the cost for 10 hours a week of care by a certified aide plus medical expenses like diapers, physical therapy and other treatments.
Sitting with Jake and his caregiver, Mariah Tarboro, in an interview Thursday, Sclater said she still can't believe it.
"Somebody pinch me," she said with a laugh.
She doesn't know exactly why or how her son got one of the coveted waivers typically reserved for emergency circumstances and applicants who age out of school-provided services when they turn 21. But she wasn't complaining.
Even with good health insurance and a flexible job that lets her work remotely from her Jefferson home, the demands of Jake's care have increased as he's gotten older and physically bigger. Sclater's mother, who moved in with them after Jake was born, can no longer lift him. And the cost for the aides who help when Jake was not in school or summer camp comes directly from her paycheck.
"You get by because you have to," she said. "But there's so many things you want to do for your kids and you're spending all your money on diapers and medicine. You can't give them everything you want to."
The long wait
The Sclater family is not alone. Lengthy waiting lists have long plagued the Maryland Developmental Disabilities Administration.
The state agency through its Community Pathways Waiver helps people with disabilities and their families pay for in-home caregivers, employment services and other support. The funding comes from the Maryland General Assembly, and, for applicants who meet certain eligibility requirements, federal Medicaid program funding.
There were 5,668 eligible applicants on the waiting list at the end of fiscal 2017, according to information provided by the DDA. This is the highest number in the last four fiscal years, although the list has exceeded 5,100 people in each fiscal year.
The number of recipients of Community Pathways Waivers was not immediately available.
Due to limited availability, applicants are ranked in order of priority. The crisis resolution group is reserved for the most dire situations: homelessness, abuse, neglect or loss of a primary caregiver. The crisis prevention group includes applicants who are at-risk for moving to the crisis resolution category in the next year, or those whose caregivers are 65 years or older. All other eligible applicants who demonstrate a current need for services are grouped as current requests.
There is also a separate category for graduating disabled students, who, in turning 21 and leaving school, are no longer able to access school-based support systems. The Governor's Transitioning Youth Initiative earmarks separate funding for these applicants to receive services regardless of the severity of their situations.
Fiscal 2017 was the first year the state served all applicants in the crisis resolution category, as well as some crisis prevention applicants, according to Bernard Simons, the agency's executive director. In prior years, funding covered only applicants whose situations met the crisis resolution criteria, Simons said.
Long waiting lists have attracted attention from local and state disability advocacy groups. The Arc of Maryland through its End the Wait Now! campaign has gathered support for the issue by sharing stories of Maryland residents with disabilities. The Arc has also lobbied the Maryland General Assembly each year for more funding.
Ande Kolp, executive director of The Arc of Maryland, emphasized the importance of expanding services particularly for families whose children have not yet made the transition to adulthood.
Limiting waivers to those in crisis can make a difficult situation even more traumatic, she said Thursday.
"The more we can do to unlock the waiting list while parents are still able to be involved in their child's transition ... is critical," she said.
Without the waiver, and corresponding funding opportunities for people with disabilities and their families shrink. Instead of finding a job or pursuing higher education with the help of a waiver-funded caregiver, a person with a disability might have to stay home. Alternatively, family members give up work or other commitments to take on that role.
It's a lose-lose situation for the disabled and their families.
Kolp also noted the community impact created when families with disabled members turn to taxpayer-funded assistance programs like food stamps to offset the financial burdens absent state services.
The value of local programs becomes all the more important without state services. Jake attends Rock Creek School, Frederick County Public Schools' program for students with severe disabilities.
In the summer, he also participates in the YMCA of Frederick County's summer camp for children with disabilities, Kids Unlimited. For Jake, who Sclater described as very social, the camp is an opportunity to interact with other kids, while enjoying activities like swimming and arts and crafts.
"He loves it," she said. "He waits for the bus to come every morning."
For Sclater, it's another time when she doesn't have to worry about finding care for Jake or his younger sister, Bailey, who also attends the camp and has Type 1 diabetes.
It was the lack of programming for students with disabilities during summer break that inspired the YMCA to launch the program in 2009, said Chris Colville, the YMCA's executive director. What began as a program for two campers the first year has blossomed into one that served about 45 campers this summer.
Campers range from fairly independent to very much reliant on the camp employees, Kelly Presnal, program director, said. Many have multiple diagnoses: autism, cerebral palsy, Down syndrome and Angelman syndrome among them.
It's a costly endeavor -- a function of the 1:3 staff to camper ratio mandated by the state plus equipment, supplies and excursions like bowling and swimming.
"It's not something we break even on, even come close," Colville said. "It's more the mission side of what we do."
Another key provider of local services for people with disabilities is The Arc of Frederick County, which serves adults with disabilities and their families through job training, educational opportunities, day programs and support groups.
It was The Arc's bakery training program that helped 24-year-old Cody Small, who is on the autism spectrum, secure a job as a dishwasher at Whittier Elementary School.
The 13-week program taught in the commercial-style kitchens at The Arc's South Market Street building encompasses all aspects of kitchen work: safety, sanitation, measuring, storage and proper cooling and thawing, to name a few.
The instruction itself is no different than any other kitchen training program, said Scott Guarino, The Arc's culinary program manager. And Small, already knew a bit about kitchen work through a prior job at Brunswick Middle School.
But Lisa Martinis, The Arc's support coordinator, described the change in Small's demeanor over the course of the training as amazing.
"When he started he was kind of shy, like looking around, asking Scott what to do," she said. She gestured to the kitchen sink, where Small started washing dishes as soon as he arrived Thursday. "Now look at him go."
"He's a workhorse," Guarino agreed.
Small has one of the coveted state waivers. The waiver pays for a job coach who accompanies him to work, and a residential life coach who comes to his his Brunswick home to work on life skills like meal planning, grocery shopping, laundry and managing his finances.
John Wiley, Small's job coach, has seen Small blossom in his job at Whittier. He's more social, talkative even with his coworkers and students alike. Though he still struggles with change, it doesn't take him as long to adjust to the new or unexpected as it did, Wiley said.
Wiley used to accompany Small to work every day, helping Small understand the directives of his supervisor and work through the anxiety that a hectic kitchen environment can create. Wiley now goes just three days per week. Eventually, he won't go with Small at all.
Small hesitated at first when asked about the prospect of working entirely on his own.
"It's a little scary," he admitted. But he also said, "I think it will be great."
The only thing better would be a job as an auto detailer, Small's dream job. He loves cars, although he can't drive one, and helps out at R & R Garage in Frederick on days when there is no school.
Sclater, meanwhile, was hopeful that Tarboro's presence would give Jake more opportunities, both medical and recreational.
"It gives him a break," Tarboro agreed. "No kid wants to be around their parents 24/7."
"Especially teenagers," Sclater added.
With Tarboro, Sclater and her husband can spend more time with Bailey, and attend to their own health needs. Sclater was diagnosed with stage 3 breast cancer last year, and underwent a mastectomy and breast reconstruction surgery. Her husband suffers from back problems, she said.
The couple has also started a charity to help families with disabled and sick children pay for things not covered by insurance. The Angel Fund was started in 2012 based on Jake's experience participating in a dolphin therapy program in Florida, Sclater said.
The charity gave away $30,000 in grants this year, helping families pay for not just the medical essentials required to care for sick and disabled children but, as Sclater described it, "the fun stuff" -- horse therapy, swimming and camps like Kids Unlimited.
Such offerings were for crucial for Jake and his family, particularly before they got a waiver. There is hope, too, for the 5,000-plus families still on the waiting list for DDA services.
As part of additional funding provided in the state's fiscal 2018 budget, the agency is in the midst of rolling out two new capped support waivers to help cut down the waitlist. The waivers, which will be available in January, will serve an additional 800 applicants, half of whom will be children under 21, like Jake, according to Simons.
"It's a big deal for us," he said. "It's a start to reduce the waiting list."
Kolp was unsure if the new waivers would really shrink the waiting list. The increased attention the changes will attract to the program might make more families who are eligible but had not yet applied do so, she said.
But, she said, "it's a step in the right direction."
Follow Nancy Lavin on Twitter: @NancyKLavin.
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