A matter of perspective
The front line between independence and institution
Portsmouth Herald - 9/12/2017
Editor's note: Direct Support issues will be the focus of a multi-part series.
Artist Michelle Schladenhauffen divides her life between "before I got sick" and everything after. The 1991 Portsmouth High grad had worked hard to overcome the challenges of life with cerebral palsy; she earned her para-educator certificate from N.H. Community Technical College (now Great Bay Community College) in 2001 and was working as an after-school counselor at the YMCA. She had a car and enjoyed an independent life, active and full with friends, work, art, karaoke and smooth moves with crutches on the dance floor.
Personal care staff provided the assistance she needed to stay out of institutional care and live independently. But that ended in 2007, when she "got sick." Going some three months without being able to find staff to fill all the support hours she needed, Schladenhauffen's health worsened and she landed in the hospital. "When I'm fully staffed, I'm good," she says. "But when I'm short-staffed, it affects my health. It can be scary."
What followed for Schladenhauffen was a re-diagnosis - not cerebral palsy, but Charcot-Marie-Tooth disease, a neurological disorder affecting the peripheral nerves. An extended hospital stay became a year-long residence because of safety concerns around not being able to find the consistent staffing she needed to support her independence. Finally, at the age of 34, Schladenhauffen was admitted into a nursing home in Hampton and her crutches were replaced with a wheelchair.
Weeks turned into months that added up to five years of her life spent in a nursing home. During that time, Schladenhauffen tried to stay as active as she could among a peer group that was decades older than she was. She began to find her voice in advocacy and signed on to the NH Leadership Series offered through the UNH Institute on Disability. She graduated from the program in 2012, about the same time that she moved into her own apartment at Betty's Dream in Portsmouth. Now at the age of 45, her voice for advocacy has only grown in intensity.
As a member of the N.H. Developmental Disabilities Council and a Self-Advocacy Leadership Team (SALT), Schladenhauffen is a familiar face and voice in Concord where she speaks with legislators and policy-makers about disability issues. She's also trekked to Washington, D.C. twice to speak with congressional representatives and senators there.
Independent living and staying in the community are the focus of Schladenhauffen's efforts. "It all comes down to the budget and it being more cost effective for people like me to live in the community and not in an institution," she asserts. "We've proven that time and time again but it seems like it's just going over their heads."
Despite setbacks, Schladenhauffen is quick to point to progress along the way and concedes the Legislature can only do so much. "Sometimes I get frustrated and feel like I'm repeating myself and nothing's happening, but a lot of good things have happened," she says. "The Americans with Disabilities Act is only 27 years old. We've come a long way but this whole civil rights movement is still pretty new."
Even so, a serious shortage of workers in care-giving roles has Schladenhauffen and others in the disabilities community on edge. Schladenhauffen cites not only her own challenges in maintaining a full staff for her personal care but the difficulty that even Betty's Dream has had in finding people to fill the role of a floater to help support the disabled residents. "Right now because the work force is so unstable, it's so important to me to maintain my staff so I can maintain my health," she says.
But an independent life in the community is a day-to-day uncertainty when it is dependent on finding and keeping staff in an environment where pay at a big box store or a fast food restaurant can be almost 50 percent higher than the going $10-$11 an hour rate for a direct support worker in developmental services.
Moreover, the direct support shortage puts developmental services in New Hampshire and the rest of the country into a shaky position. The paradox between the system's stated goals- the steady push for employment in competitive jobs, a mandate for services in community settings - and the lack of people to support the fulfillment of those goals is not lost on Schladenhauffen, who wonders aloud, "What happens after a person is facilitated out of the nursing home or out of their parents' house and they're in the community? What is the plan then? How can you facilitate people into the community when there's not enough work force to support them? That's the issue right now."
Next month, a roundtable of advocates for the Direct Support work force.
Incorporated in 1983, One Sky Community Services has been dedicated to providing a comprehensive array of services, supports and programs to individuals and families with intellectual and developmental disabilities, as well as acquired brain disorders. A private 5013C nonprofit organization, it is the designated area agency serving the following communities: Brentwood, Deerfield, East Kingston, Epping, Exeter, Fremont, Greenland, Hampton, Hampton, Falls, Kensington, Kingston, New Castle, Newfields, Newington, Newmarket, North Hampton, Northwood, Nottingham, Portsmouth, Raymond, Rye, Seabrook, South Hampton and Stratham. One Sky works with nearly 1,200 individuals and families on a yearly basis.