NN woman with Down Syndrome receives a waiver

On a March morning, Margaret Jean "Jenny" Hatch sits at the kitchen table in the light, spacious Hampton home of Jim Talbert and Kelly Morris.

At first glance, it's an idyllic scene. The couple has prepared lunch and Jenny, 28, and Morris' daughter, Jordan, 14, are all seated together.

But Talbert and Morris are at their wits' end. "It's overwhelming. It's all-consuming," says Morris, who drops a stack of papers on the table in front of her. They're the case management records and correspondence regarding Jenny, who has Down Syndrome, and Jordan, who has cerebral palsy, is blind and has severe mental retardation.

They're desperate for help with two disabled people in the household, but determined to try to do things their own way.

Jordan is on the local Community Services Board's waiting list for an ID/MR waiver. In the interim she has services through the Elderly or Disabled with Consumer Direction waiver that provides the family several hours of help in the home. Morris wants more help for her, and would also like environmental modifications to Jordan's dad's home and vehicle that would allow visits in her wheelchair.

Already frustrated, she's more stressed by the situation with Jenny, who is recovering from a broken back caused by a bike accident two weeks earlier. Before the accident Jenny was working a few hours a week at Talbert's thrift store, where he employs some staff with disabilities. The couple visited Jenny in the hospital and, when her family said they couldn't take her in — her mother has her own health issues and her father lives out of state — they took Jenny home with them.

Before that Jenny had been living for several months with a woman who worked nights. "It wasn't safe. She has an IQ of about 70. She was out riding her bike on Warwick Boulevard, which is how the accident happened," says Talbert.

Talbert and Morris anticipated Jenny's stay as a temporary arrangement until the Community Services Board could find her a group home placement — for that she would need an ID/MR waiver. By taking her in, however, the urgency of Jenny's situation diminished and her shot at a waiver went down accordingly. "She's penalized because we're concerned about what happened to her," says Morris.

For weeks, they wrangled with authorities about the definition of homelessness. Finally, they said they couldn't care for Jenny any more. Her demands were too much. They relinquished her to the care of the Community Services Board, which was then able to put the system to work to find Jenny emergency shelter.

She received an ID/MR waiver in the July 1 allotment. "We're ecstatic for her," says Morris, who continues to push for services to meet her own daughter's needs.

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