by Kathleen Bisset

When families or single people share their homes and lives with developmentally disabled individuals, social care agencies term it lifesharing. Lifesharing includes sharing goals, activities, holidays and daily life with another person. It gives a permanent home to those who may have never celebrated a birthday. It promises love and support to indidivuals who need and deserve them. And it can create long-lasting friendships that transcend social boundaries.

“I think it’s the greatest job ever,” said Nicki Reich, a Rebersburg resident and the only person in the county who has opened her home to someone through the Lifesharing program.

Josephine, 66, and Janet, 42, both with mental retardation, are members of the family for Reich. The family has shared their lives and home with Josephine for 11 years and Janet for six years.

“This is normal for us,” said Reich. “You’re basically adding onto your family. It’s wonderful.”

Three organizations in Centre County provide Lifesharing services: Skills of Central Pennsylvania, Community Service Group and IFC Mental Retardation Services in Huntington County. Skills has placements throughout Blair, Cambria, Clearfield, Huntington, Mifflin, Juniata and York-Adams.

Lifesharing in Pennsylvania has been around since 1982, yet Centre County residents have not embraced the program and 12 people here continue to wait for someone or some family to become their Lifesharing provider.

Sarah Shaw, Lifesharing director for skills since 1988, knows the difficulties of recruiting in Centre County.

“It’s too hard to find people to do Lifesharing,” Shaw said. “I’ve tried mailing ads, getting the word out, even standing at the mall.” Although Skills has sent out postcards, had functions, even made a television commercial regarding Lifesharing, they have not received the response they were hoping for here.

“It’s a great opportunity to make a difference in someone’s life; to make a new friend. And it gives the family a chance to work at home,” said Shaw.

The process of learning about and committing to the program is a deliberate and supportive one. The interested home provider is matched with the person through personal meetings, thorough training for both parties and multiple visits. They start at a neutral location, eventually move on to home visits and then overnight visits, all assisted by agency staff.

“Visits can take months so people get to know each other, form a relationship and are sure that it is a good match,” said Shaw. “We teach the potential family about the person and have them talk to the people who know them best.” Additionally, there is an assessment which lists the individual’s capabilities.

Debbie Woolford, Lifesharing Program Specialist for Skills, was so inspired by Lifesharing’s mission that she switched jobs six years ago to her current position. Yet, like Shaw, Woolford has noted the difficulties in finding individuals or families to embrace Lifesharing.

A monthly, tax-free stipend is provided to the caregivers, the amount of which differs depending on how much care the individual needs.

“It’s not going to get you rich,” said Woolford. “But it’s a way of life.”

Additionally, with State College, a town with a largely transient population, the largest metropolitan area in Centre County, finding people to participate in the program is difficult.

“With the university here, every year we struggle in Centre County,” said Deb Tate, assistant administrator for the Centre County Office of Mental Health/Mental Retardation-Drug and Alcohol. “We try to get the word out, to educate people on opening their lives.”

But for the one person who has opened her home, it’s a mystery why more don’t.

“I think they would find it so rewarding,” said Reich. “I just don’t understand why more people don’t do it.”

Reich has three children of her own, one of whom experienced severe head trauma and brain injury from a car accident at the age of six.

“I needed a job where I could be at home,” Reich said. Lifesharing gave Reich the opportunity to work from home and provide for both Josephine and Janet. “You get so much out of it,” she said. “You’re able to make a difference in someone’s life.”

“They might not have ever had the chance to be in a family,” Woolford said of Josephine, Janet and others with developmental disabilities.

“Joey had never had a birthday party, she had been institutionalized her whole life,” Reich said. “Now we celebrate her birthday. And we still have Santa Claus!”

Reich said her children have become more open, understanding people due to their interesting family dynamic. Josephine is non-verbal, which sometimes scared friends of Reich’s children while growing up. Yet, even her young grandchildren are understanding and aware, and know just when Josephine might need a hug.

“It’s such an advantage for my kids, they don’t look on those with disabilities any different,” she said.

Families or individuals who provide Lifesharing are supported by a case manager who tracks progress and goals, and keeps up with the individuals, families and the agency.

Paul Zimmerman, a point of contact for Lifesharing at the county, said the state requires monthly visits to the person being cared for, as well as a home visit for the provider every three months. The monthly visits can be during community events, at a day program if the person attends on, or during normal daily activities and events. Skills also has 24-hour on-call staff for immediate assistance.

Additionally, if the caregiver needs a break or needs someone to watch the individual while they are away, a Substitute Care Provider is an option.

“We can pay another person to temporarily care for the individual if the Lifesharer needs a break, has a date, is ill, etc.,” noted Shaw. “The Substitute Care Providers have to pass a screening process as well.”

“There is a lot of support for families who do Lifesharing,” said Tate. “Although it’s a big commitment, it teaches you so much to open your life in that way. You’re making someone’s life better while enriching your own.”

Lifesharing is a permanent process for families or individuals who are stable and secure with their lives. The program is looking for people who can make a long-term commitment, Shaw said, but the benefits go both ways.

“It’s the ability to make a new friend and companion, and each benefits from the other,” said Shaw. “The provider benefits from the unique gifts and talents that the individual brings, and the individual is given a home and a family.”

For more information contact:

Deb Tate

dltate@co.centre.pa.us

Paul Zimmerman

gpzimmer@co.centre.pa.us

Centre County MH/MR

(814) 355-6782