25 Investigates: Walpole family says MA red tape keeping their sister from getting care she needs

A Walpole family says they’re caught up in bureaucratic red tape as they fight for care for their sister with multiple disabilities.

The Massachusetts Department of Developmental Services [DDS] says the law requires the person to be in the least restrictive setting that can their needs.

But the family turned to 25 Investigates saying the places suggested for their sister’s care just won’t cut it and that some wouldn’t accept her because they could not provide the level of she needed.

Subtitle: “This agency that is supposed to be helping our sister and our family during the worst time of our life, is nowhere to be found”

“Our sister deserves more than what she’s getting. Sitting in a hospital with sores on her arms from sitting in her wheelchair all day,” said Kim Meehan of Walpole.

She’s talking about her sister, Kristen Robinson, 50, who she says has been all but stranded at Faulkner Hospital in Jamaica Plain for the last 10 weeks.

“She’s been medically cleared to leave. And they have facilities she can go to right now,” said Karen Brady, Kristen’s other sister.

Meehan and Brady say their little sister contracted meningitis as an infant in the 1970s. It left her with multiple disabilities. She has cerebral palsy. She’s legally blind, a quadriplegic, and suffers from dysphagia, which limits a person’s ability to swallow.

A choking incident landed Kristen in the hospital on April 8th. And it’s unclear where she’ll go next.

Their mom, Kristen’s lifelong caretaker, died in December after a brief battle with cancer.

“Our mom did such an amazing job. I mean, but she sacrificed her entire life,” said Meehan. “We’re thinking, ‘Oh, help is going to come. We’re going to get some help.’ But it never came.”

Meehan says in the final months of their mom’s life, they began exploring residential options for Kristen’s care long-term, a residential setting. They say Kristen requires around-the-clock medical care. Before she was hospitalized, the sisters and their husbands were on rotating shifts at their late mother’s home

“This agency that is supposed to be helping our sister and our family during the worst time of our life, is nowhere to be found,” said Meehan.

Meehan and Brady say DDS never sent extra nursing staff to the family’s home. And now they say they’re fighting with DDS for an appropriate residential placement. As the weeks go by, Kristen sits in the hospital for no medical reason, according to the sisters.

“No stimulation,” says Brady. “She hasn’t been with her day program, hasn’t seen her friends.”

In a statement to 25 Investigates, DDS wouldn’t comment on any specific case.

A spokesperson wrote, “In each case, the Department of Developmental Services (DDS) works hard to connect people with appropriate care as efficiently as possible.”

The sisters say DDS has recommended group homes and nursing homes. But, because of Kirsten’s significant medical needs, they say she’s been rejected from some of the facilities.

“We were told that Kristen could not be accepted here,” said Brady.” “Kristen was declined,” said Meehan.

Instead, the family is pushing for Kristen to live at the Wrentham Developmental Center. That’s a state-run intermediate care facility or ICF.

“She would be safe because there it’s a facility geared to taking care of the developmentally disabled, period. Like that’s what their job is,” said Brady.

They say that the state has declined that request, but the family says they don’t understand why.

DDS told 25 Investigates they are not mandated to honor location requests.

“When DDS is requested to place an eligible individual in a residential program, placement options are determined based on individual circumstances, needs, and other factors. Both agency staff and an individual’s guardian engage with each other to move forward to determine the most appropriate care. DDS placements are guided by state and Federal laws and regulations, as well as established case law, to provide least restrictive and integrated community placements. As such, community settings have been built up over the years to provide a wide array of services. This includes behavioral and medical model homes with 24/7 nursing and can address clinical needs to achieve community integration and move away from the institutionalization of individuals requiring comprehensive care.”

The sisters say they want a place where they believe Kristen will be safest and happiest.

“She deserves to have a life, and she deserves to have everything that she is entitled to and she’s suffering,” said Meehan.

25 Investigates asked DDS for more information about what the least restrictive means for people who need around-the-clock care.

We will let you where Kristen ends up and when.

This is a developing story. Check back for updates as more information becomes available.

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