I Want to Start a Movement:  Open Up the Conversation About Sharing a Life

I’m sure many of us have had this experience; there are some people you just can’t live with! My first experience was in college when a friend and I took jobs and shared a place at the Jersey Shore. I could tell I was getting on her nerves, and I imagine she knew the feeling was mutual; but hey—she put coffee grounds in the sink!

Okay…that was a minor offense in the grand scheme of things, I would learn later after I got married. We had dated for over a year, and we had plenty of opportunity to learn what mattered to us both; so when we signed the first lease, although there were some adjustments, there was also commitment (44 years and counting worth).

About 25 years ago in the developmental disabilities field, we created a new option called ‘Lifesharing.’ The idea was to match a person with disabilities with an individual or family who would assist them where needed and immerse them into their own daily lives; and through this very intentional—almost dating-like process, we’d form a bond between folks. These bonds were and are still to this day, remarkably long lasting; especially with the system of oversight and supports in place, that helps empower them to do so. There are a plethora of amazing stories of the connections and bonds built through Lifesharing; here are a couple of my favorites:

Mary lived with her sister Joan until Joan became gravely ill, and felt a little overwhelmed while trying to meet Mary’s needs and occasional challenges. Over a few months’ time, Mary and her sister explored the idea of Lifesharing as a potential opportunity; and a perfect match was made. Mary keeps in touch with her sister Joan; feels secure in the home of a new friend; and is receiving the support she needs.

Pat lived in a group home and was preparing to graduate from public school. He anxiously desired to achieve more freedom and responsibility, but our team did not think he was quite ready for supported independence. Pat was introduced to the idea of Lifesharing, and although his long term goal remains to have a place of his own (which looks very achievable); this step will help support him as he continues to hone the skills and self-direction needed for independence.

Did you know…?

  • KenCrest currently serves 61 individuals through Lifesharing, and participates as an active member of the State Lifesharing Coalition;
  • Lifesharing is a state regulated program with many standards and mandates including background checks and special training;
  • Lifesharing providers receive regular visits from professional staff, and special support to help implement each person’s individual goals;
  • Lifesharing providers receive state and federal income tax-free stipends for each day of service they provide;
  • Lifesharing providers can receive assistance to make modifications to their homes to support people with physical disabilities.

In Pennsylvania alone, there are over 16,000 people waiting to receive support services; and the states that maintain and update their waiting lists— pay special attention to individuals who are living with parents who are further along in years, think 80 years old and up. Most of these parents are happy to have their adult children who happen to have a disability, living with them; some will go so far as to say their child will not leave home until they pass away. I would caution these parents to consider other alternatives. I have met many grieving individuals who struggle to deal with the loss of their parents. As if the loss were not enough, they get anxiety around what happens next.   It’s  essential to plan ahead before a parent passes away.  What if individuals with the disabilities could expand their circle of support in advance; meeting and building relationships through respite supports that intend to become new homes after the passing of parents? Bonds would be formed early on, ensuring a greater sense of security and peace of mind for everyone.

When you think about it, all of us share our lives in one way or another—with family, friends, and strangers who become like family and friends. While many of us may not become rich in material assets, we each strive to become rich in happiness, health, and meaningful connections; especially those that enable us to grow and share our lives with others. Lifesharing is something we all do; and the official service of Lifesharing is something to recognize, celebrate, and grow.

For more information on Lifesharing through KenCrest visit the Lifesharing page on KenCrest’s website; or the State Lifesharing Coalition page at www.PALifesharing.com.

 

*All of the names in this piece were changed to protect the identities and privacy of our family members

October 19th, 2018 Uncategorized
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