Shared living opens new doors to people with disabilities – G. Wayne Miller, Ocean State Stories

by G. Wayne Miller – Ocean State Stories

This story is published in partnership between RINewsToday.com and Ocean State Stories, a journalism initiative at Salve Regina University.

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‘I would recommend it to anybody who’s looking for something rewarding in their life’

JAMESTOWN – Katherine Thompson was attending a day program for developmentally disabled people in January 2009 when her elderly mother, with whom she lived, fell seriously ill.

She learned of this when Suzy Robertson, who worked at the center that ran the program, drove her home.

When they arrived, “there was no one there,” Robertson said.

Thompson’s mother had died.

“I couldn’t leave her,” Robertson said. “So I said I would keep her temporarily at my home until they figured out some type of housing for her.”

Time passed and Thompson continued living with Robertson, their relationship strengthening. Eventually, according to Robertson, Thompson’s father wanted to place his daughter in a group home.

But “she had never really been in any group home setting,” Robertson said. “She’d always been at home” – her late mother’s, and now, Robertson’s.

Robertson wanted her to stay, becoming part of her family.

Thompson wanted that, too.

But how to make it happen?

“Long story short, we met the wonderful Mrs. Joanne Malise.”

Malise, who had a long history of serving people living with intellectual and developmental disabilities, was employed by a non-profit organization that specialized in shared living – an arrangement in which a client lives with a family unrelated to them by birth or adoption.

“I didn’t know there were programs like this where Katherine could actually stay here if she wanted to,” Robertson recalled “She didn’t want to go to a group home so we went through all of the training and Katherine pretty much advocated for herself — that she’d rather be in a shared living situation than a group home. And so here we are 15 years later.”

Today, Malise is the Rhode Island director of Living Innovations, a non-profit organization with branches also in Massachusetts and New Hampshire that declares as its mission providing “support to people of all ages and abilities to have a good life at home and in the community.” Funding is received from the state Department of Behavioral Healthcare, Developmental Disabilities & Hospitals via Medicaid sources. The Rhode Island branch of Living Innovations has its headquarters in Warwick.

“When I got the referral from the state, I moved to qualify Suzy to be the home provider and it’s obviously been a very long-lasting stable and safe environment,” Malise told Ocean State Stories. “It was Katherine’s determination really that made it work.”

According to Malise, “more than 160 people statewide of all abilities, of all capabilities,” are currently living with families in a shared living arrangement. Prospective family members with responsibility for a person must undergo extensive vetting and training before opening their door to someone, Malise said.

“What we look for in home providers is, number one, a person with a good heart, someone who is a natural nurturer, a caring person,” she said. “They have to have an extra bedroom because everybody has their own bedroom and privacy. They then become an independent contractor. Suzy is not an employee — she’s a contractor.”

And she, like others, “is held to a very high standard. I can go into her house at any time. I know more of her background and her family than any people would ever know about an employee. She’s ‘at-will’ and if I don’t like something that she’s doing I can cancel her contract. I have to make sure and have confidence that it’s a safe home that I would be comfortable with a loved one being in.”

Before being accepted, home providers must pass a criminal background check, have a good driving record, and insurance on the home they own or rent. They must have sterling references and be certified in CPR and first aid, among other requirements.

Malise, who holds a master’s degree in social work from Rhode Island College,  began her career in 1979 as a social caseworker at the Ladd Center in Exeter, where residents for decades had endured abuse and neglect, prompting advocates for the disabled to label it “a snake pit” and “a human warehouse” from which few ever escaped, not even for a day.

“It was completely dehumanizing to be at Ladd,” Malise recalled. “A ‘good day’ was when nobody moved and everybody sat against the wall.”

Conditions at Ladd were epitomized in a declaration 30 years ago by Robert L. Carl Jr., the state administrator who played a critical role in transitioning to a community-based system of care for people living with disabilities.

“The beast is dead,” Carl said on March 25, 1994, when the final resident of Ladd moved away to a community setting and the institution, established in 1908, closed. “Nazi Germany killed these people. Rhode Island made a commitment to treat them with dignity and respect. Nobody will ever be able to throw away a human being again.”

Anchored by Robertson’s home, Thompson leads a fulfilled life. She works part-time at North Meadow Farm in Jamestown, where Robertson’s father lives, and participates in activities at the Jamestown Arts Center. She goes on walks, visits bookstores, and spends time at the beach. At home, she often cooks. Her laughter helps brighten the days.

“Katherine is a fully integrated part of Suzy’s family,” Malise said. “Suzy’s family has become her own. She still stays connected to her family of origin, but Suzy becomes the family of choice and she has a full life and is well known in her community.”

“My life has changed for the better having Katherine in it,” Robertson said. “This was something I didn’t plan on doing and she changed my life and we’re just growing old together. I would recommend it to anybody who’s looking for something rewarding in their life.”

The staff of Living Innovations, she added, are “the most supportive people I’ve ever had the pleasure of working with. If I ever need anything, it’s not like I’m alone. I have nothing but good things to say about them. And Katherine’s been a joy in my life and in my family’s life.”

“I agree with Suzy,” Thompson said.

“What else do you want to say?” Robertson said. “You always have a lot to say to me!”

Thompson laughed.

“We take care of each other,” Thompson said.

“And that is true,” said Robertson. “We take care of each other.”

On its website, Living Innovations provides a detailed definition of shared living:

“A Shared Living Arrangement (SLA) is a residential option for people with Intellectual and/or Developmental Disabilities (I/DD) who reside in Rhode Island who are in need of 24 hour care. It is a much more personalized and less restrictive residence as compared to a group home.

“SLA’s offer 24 hour care in a nurturing home environment with an independent contractor. Independent contractors are rigorously screened, have background checks and must be CPR/First Aid certified. They must also complete a state mandated pre-service skill development and demonstrate proficiency in health care/medication management.”

Qualifications also are listed:

“A SLA home provider is an Independent Contractor who has passed an in-depth screening and approval process. Home providers must pass a Rhode Island Background Criminal Check (BCI) and a National Criminal Investigation (NCI); own or rent a home in Rhode Island with an extra bedroom; have home owners or renters insurance and car Insurance; have a good driving record; be CPR/First Aid Certified; have good references (professional and personal); be available to leave work if the person in their care becomes ill & be available 24/7; willing to participate in any personal skill development customized to the person in their care; able to accurately document medication administration and follow any behavioral guidelines; be able to submit receipts for expenditures on a person’s behalf; commit to supporting the person’s Individual Support Plan (ISP) to help them achieve their goals; and keep people connected to their friends and family.”

Families interested in participating in shared living can apply here.

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