Independent living challenges to be scrutinized

Minneapolis resident Lance Hegland will use a $75,000 Bush Foundation fellowship to study and address independent-living challenges in the Twin […]

Minneapolis resident Lance Hegland will use a $75,000 Bush Foundation fellowship to study and address independent-living challenges in the Twin Cities metropolitan area. The longtime disability advocate will spend the next four years studying ways to improve recruiting, screening and relationship-building between direct support professionals (DSPs) and the individuals, families and provider organizations DSPs work with.

Part of the study will include community meetings and project plans. Hegland is hoping for input on his study from people with disabilities, their families, friends, and DSPs to contribute toward improving DSP services in the Twin Cities and beyond. He hopes to develop tools that can also be used by DSP provider agencies.

During recent years, Hegland has been exploring new models and tools for delivering better direct support services. One project is Independence Partners, which will bring individuals with disabilities, families, professionals, community leaders, and entrepreneurs together to build new independent-living tools.

The first tool he is working on is DSP-Match, offering quick, safe and individualized job matching and relationship-building tools for direct support consumers, families and professionals. The tool includes web-based job board and self-help resources.

“Nearly 70,000 Twin Cities’ residents with varying circumstances need assistance with selfcare tasks including bathing, dressing, and grooming,” said Hegland. “We struggle to connect and build long-lasting relationships with the roughly 63,000 DSPs we work with. DSPs could be personal care assistants (PCAs), home health aides, homemakers, residential advisors, and job coaches that help to empower our independence. DSPs are critical factors in our health and safety. Plus, DSPs often help us to independently participate with our families, friends, communities, and employment.”

Hegland has muscular atrophy, a genetic neuromuscular disease that causes significant muscle weakness, which slowly worsens over time. He relies on assistance from PCAs to dress, prepare meals, shop, and run errands, among other daily activities. He obtains services through Minnesota’s PCA Choice program,where participants are responsible for managing their own PCA support teams. Like other PCA Choice and Consumer Directed Community Supports (CDCS) program participants, he is responsible for recruiting, interviewing and hiring his PCA team members, educating them, maintaining their work schedules and providing performance evaluations.

In a 2009 study of Minnesota’s PCA program it was stated, “PCA [participants] favored the PCA Choice program in terms of level of control and flexibility over the activities the PCA performed, but expressed challenges with their employer responsibilities and lack of support.” Even today, this remains a growing challenge for participants in both the PCA Choice and Consumer Directed Community Supports program. Hegland has a long record of community service, recently joining the Minnesota Department of Human Services State Quality Assurance Council (SQAC). He also serves on the Minnesota Departmen of Human Services Health Services Advisory Council (HSAC) and the Hennepin County Medical Center

(HCMC) Healthcare Reform Steering Team, and the Citizens League Health and Medical Advancement Group.

Hegland received the 2011 Direct Support Professional (DSP) Advocate of the Year Award from the Direct Support Professional Association of Minnesota.