21st birthday is a special celebration for one waiting list family

By Kate Giammarise / Pittsburgh Post-Gazette

Tejus Sharathchandra stands in front of the room, a “Happy 21st Birthday” balloon tied to his jeans, wearing a bright orange “21 years of being awesome!” T-shirt.

Dozens of his peers at the UPMC Vocational Training Center on the South Side are singing “Happy Birthday” to him, while two large sheet cakes, one chocolate and one vanilla, will soon be cut and served.

Today could have been a dark day for Tejus and his family. Instead, it is full of singing, cake, pizza with his classmates at CITY Connections East, more cake, kickball and swimming with his teen and young-adult group at the Jewish Community Center in Squirrel Hill, and a special family dinner at Taco Bell — a treat he had been anticipating for weeks.

For months, Tejus’ family had been uncertain if his 21st birthday would mark the end of the intensive services and supports he receives for his intellectual disability and autism.

For families in Pennsylvania who have a child with an intellectual or developmental disability, a 21st birthday can be an unhappy milestone — an end to the vital services their children receive.

Until age 21, the care they receive, such as behavior and occupational therapy, is considered a federal entitlement — that is, Medicaid has to pay for it. At 21, that entitlement ends, which can lead to a “cliff” effect of a sudden cutoff of services and being put on a waiting list until additional funding is available. There are more than 13,000 people in Pennsylvania on a waiting list for intellectual disability services — there are more than 4,500 on the emergency waiting list.

So Tejus’ birthday isn’t just a birthday celebration — it’s also celebrating that he’ll be receiving what is know as a “consolidated waiver” — meaning the state’s Medicaid program, using a combination of state and federal dollars, will cover all the costs of his care.

“It’s the rest of his life. It’s his future. I feel like, we’ve solidified that. He has so many options now,” said Kristen Capp, Tejus’ supports coordinator.

Receiving — or not receiving — waiver funding is often life-altering for families on the waiting list.

Parents of these children must sometimes leave paid employment to care for their children at home, as Tejus’ mother, Chitra Sharathchandra, did. Now that she knows Tejus will be receiving waiver funding, she is looking to return to the workplace in her field of computer science.

Waiver funding will allow her son to continue doing data entry and mailing work at the UPMC Vocational Center; cover his habilitation aide assisting him with tasks around the house, accompanying him to the JCC or on community outings 25 hours a week; and it will cover the cost for him eventually to live outside his parents’ home, in a small-group residential setting with other disabled adults.

Mrs. Sharathchandra said it also has brought her peace of mind: “Can I now stop worrying, that if I’m not here tomorrow, there’s going to be somebody else who can do what needs to be done with Tejus?”

But not every family is as lucky as the Sharathchandras.

“I am definitely pleased that Tejus will finally be receiving the home and community waiver services that he and his family so desperately need. However, Gov. [Tom] Wolf and his administration need to understand that there are 15,000 Pennsylvania families who are also desperately waiting,” said Nancy Murray, president of The Arc of Greater Pittsburgh at ACHIEVA, who has worked for many years with The PA Waiting List Campaign to push for additional funding for families waiting for services. “Some of these families are headed by single caregivers, some by elderly caregivers in their 70s and 80s, and some who have had to give up their jobs to stay home and care for their adult child with a disability.”

Advocates have pushed for years for the governor and state Legislature to fully fund services and have succeeded in driving down the number of families on the waiting list. However, at a state Capitol hearing in September, Pennsylvania Department of Human Services officials said they will not be able to fund additional spots to take individuals off the waiting list this year.

Several state legislators said they believed $6.5 million from the state budget they passed in July specifically was appropriated to move 250 people off the waiting list, in addition to 700 graduates from special education programs.

Ted Dallas, state Department of Human Services secretary, said the cost of providing care to people currently receiving services has increased, and that last fiscal year’s budget left him with a $21.6 million shortfall for services that had already been provided.

These are services like the aide that enables Tejus to attend the teen and young-adult program at the JCC, where Tejus spent time later on his birthday, playing kickball and getting another treat -— cupcakes. Tejus and the other participants in the program, headed by Lynne Carvell, go on excursions to the library, play games, make art projects, generally learn social skills and have a community of peers.

“They deserve everything that other people have,” she said.