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Good to Know: A Passion for Their Special Needs Adult Kids
WY Daily January 17, 2010 by Desiree Parker
In 2008, I shared the story of a start-up nonprofit in the Triangle called Parents and Advocates for Special Housing Needs (PASHN). I caught up this week with co-founder Nancy Kowaleski, who has an adult daughter, Jamie, with cerebral palsy.
Kowaleski is worried about what Jamie will do when her parents are too old to care for her full time – a reality that is fast approaching. When I saw her, Kowaleski (now a grandmother of about 8 grandkids, if I counted right) was recovering from a pulled back muscle from taking care of her daughter, who uses a wheelchair.
Not that she would tell her daughter about the cause of the injury.
This is a situation many parents in the area who have special needs children are facing – there’s just hardly any appropriate housing for their kids, who are adults but won’t ever be able to live completely alone. As parents get older, their ability to take care of their children is diminished. When they pass away, there’s often no one left as caregiver.
PASHN’s aim has been to build a group home where intellectually and developmentally disabled adults can live and get the care they need. They’re getting close to their goal – so close they have the location all picked out and a partner group, Presbyterian Homes and Family Services (PHFS), to manage the place.
The owner of Greensprings Office Park has graciously offered PASHN a 5-year lease for a building in the office park, with the option to buy after the five years is up. They’ll be able to build the inside to accommodate about 12 folks, with room for caregivers and administrators.
“I bawled like a baby when I first saw it,” Kowaleski says. “It was like a dream put right in front of us.”
The only hurdle now is getting the funding – not an easy task in the current economic climate, where nonprofits are wrestling for dwindling donation funds to help growing numbers of people.
But this group has packed on some nonprofit-managing muscle since last I talked with them. Their board has grown, their Web site is full of great stuff, and they’ve nearly finished all their important planning. The group home will cost about $600,000 a year to run, but Medicaid waivers from residents will help defray some costs. Kowaleski figures once they raise $250,000, they’ll be able to do the renovations to the building and move in.
It won’t be a minute too soon, either. They already have a list of 200 families – the Kowaleskis included – waiting to get a room in the home. The PHFS will have some tough choices to make when they take the reins and have to pick just 12 from the list.
In the meantime, PASHN has been developing fundraising events so they can make enough to finish the dream. St. Olaf, a Catholic church in the Triangle the Kowaleskis belong to, recently gave them a check for $1,873 (though Kowaleski didn’t ask for the funds since she’s very involved with the church). Many parishioners have offered donations, and a recent art auction raised $3,500 for the group.
PASHN has various small fundraisers planned, but a big one coming up is the First Annual William and Mary Dance Marathon. An all-night dance party to benefit PASHN, the dance marathon was the brainchild of two college students. People who sign up will dance for 12 hours straight, and organizers will raise money along the way through cover charges and the small fee paid by participants.
A similar event held at Penn State raised about $2 million, Kowaleski says – but she’ll be happy with whatever this fun event might raise.
Though special needs adults have also been affected by budget cuts in the past year or two – losing their precious jobs after cuts from the CSB, for instance – Kowaleski is hoping this year will bring some better news and the chance at a safe, happy adulthood for her daughter and others in the area.
http://www.wydaily.com/blogs/good-to-know/3732-good-to-knowa-passion-for-their-special-needs-adult-kids.html