C&C States
Self-Direction Handbook
Data &Pat Wright
Pat had just finished her Masters in education when she started having problems with her health. Friends thought she was just run down but this active mother and hockey player knew something wasn't right. She was soon diagnosed with Crohn's Disease and then Chronic Fatigue Syndrome. Pat's life style changed suddenly and dramatically. She struggled with work and family responsibilities and finding doctors who would listen to what she wanted. In 2001, Pat attended a training by Partners in Policy Making. This started her networking and she soon found about a waiver program. Once Pat enrolled in the waiver program and had some more choice in her services, she felt like she could "finally take a deep breath".
However, when Pat needed some nutritional supplements, she wasn't able to get them through her waiver program. Someone suggested she join Minnesota's Cash & Counseling project, CDCS. At first, Pat wasn't sure if she wanted the increased responsibility of the program, but after enrolling she found that it "opened my eyes to what healthcare can be". After dealing with workers that she wasn't always happy with or struggling to fit her holistic healthcare approach into a medical model, CDCS was finally offering her the opportunity to get what she needed. Pat says she "felt helpless a lot of the time, now I'm thinking ahead about what needs to be done and who I can call to help".
Pat uses her budget to hire workers and purchase goods. Her son helps with some chores around the house. She uses a church group to do household cleaning and yard work. Pat has a partnership with a student from the Middle East who does household repairs for her and who she helps learn English. In addition, Pat purchases nutritional supplements needed for her special diet. She also has a woman who helps her with her paper work and financial matters. She has formed a team with her flexible case manager and county case manager. They learn from each other and work together to make CDCS work.
Pat has joined a state advisory group and is always finding people to talk to about enrolling in CDCS or becoming a flexible case manager. "Rather than seeing myself as a sick person, I know see myself as a pioneer. I'm on a mission".