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An Accident Changed Everything; A PCA/Respite Directory Helped

 
Disability poster

A hit-and-run accident one hot July night in 2011 upended the lives of Steven Makris and his family.

At age 39, he sustained a traumatic brain injury. The next year, when he was released from rehab to live with his family in Chelmsford, they were overwhelmed trying to meet his needs.

“Steven has very poor vision from the accident, and a lot of other limitations,” his mother, Judith Marr, says. “He needs a PCA [Personal Care Assistant] to help with his activities-of-daily living, like shaving and showering, and getting in and out of bed. He brushes his own teeth, but has to have things set up beforehand. And, he needs someone to prepare his meals and clean up afterward.” The work is monotonous, demanding, and continual.

A North Andover family, who prefers to be identified using their first names only, faced a similar situation. Their adult son Brian has Lennox-Gastaut syndrome, a severe form of epilepsy, which the National Institute of Neurological Disorders and Stroke says can impair intellectual functioning.

Brian required assistance his family alone couldn’t provide. They put up ads for in-home help on community bulletin boards, but these seemed to get lost among notices about missing pets, used cars, and local theater productions. The candidates who did respond often disappointed them.
Brian’s family was able to piece together some support through friends and their church, but this was more of a temporary solution. “And, caring for Brian is hard work because he’s non-verbal and non-ambulatory,” Brian’s mother, Lyn, emphasizes.

Both families ended up turning to a non-profit for help finding qualified caregivers. Rewarding Work Resources of Brookline is the sole non-profit organization in the Commonwealth specializing in helping people with disabilities locate personal care assistants and respite workers. It also is the only such organization that works with the Medicaid population.

Rewarding Work maintains an online directory of more than 7,000 PCAs and respite workers in Massachusetts. The primary website for individuals with disabilities, their families, and workers may be found at www.RewardingWork.org. Information about the MassHealth PCA service is located at www.findpca.org. Families needing respite information may connect at www.MassRespiteDirectory.org.

Technologically, Rewarding Work operates as a single worker database, so users may register and search for workers who match their needs at any of the above web addresses.

“Having information on the website speeds things up,” says Lyn. “You can look for people who are qualified on paper. It’s been great to have the website, it really has.” The family employed a PCA through Rewarding Work four years ago, who continues to work for Brian. The PCA’s schedule varies, but she currently works 20 hours per week. In addition, the family is now interviewing new candidates to help them out on weekends.

Judith Marr also has found a number of PCAs using the directory, including some who have been with the family for years. Although she herself is a certified nurse’s aide, she could not care for Steven without the personnel she has hired through Rewarding Work. “I’m 61 and this is a two-person job,” she says.

This year, Rewarding Work introduced a new respite service to offer family caregivers respite, a break from the duties of caregiving. Nearly 4,000 workers in Massachusetts, who have signed on with Rewarding Work, specified they are willing to provide respite, including providing overnight respite care in a family’s home.

Both Marr and Lyn say respite services are important for family caregivers. Says Marr, “Mum needs a break, too!” Lyn agrees, saying that anyone doubting the necessity of respite care “can come and stay with my family and take care of my children.”

Using Rewarding Work, people can customize their searches for PCAs and respite workers in dozens of ways—by sorting the candidates’ profiles by their zip code, education, professional experience, distance from a family’s home, languages spoken, access to a car, schedule/availability, and other criteria. Many workers post their resumes in addition to their succinct and informative directory profiles.

Families can screen candidates online, in the comfort of their homes, before taking the next step of contacting them by e-mail or telephone. In addition, families can post online ads describing their unique situation and requirements. As employers, families are responsible for checking the references and backgrounds of all workers they hire from the registry.

Judith Marr believes Rewarding Work has made a daunting, time-consuming task much easier. "I did not want to hire just anyone from off the street,” she says. “I wanted to hire people I could trust with my son's care. I would have been totally lost without Rewarding Work."

END

 

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