Preserving Lives, Conserving Costs: CDCS Works

A Campaign to Support Persons with Developmental Disabilities and Their Families
To Preserve Consumer Directed Community Supports (CDCS)

Sponsored by The Arc of Minnesota -- December, 2004

My daughter Courtney is a vulnerable 24-year-old, totally dependent on others for her care. She has cerebral palsy and severe cognitive disabilities, is unable to see, is nonverbal, and has many other medical needs. She depends completely on her gastrostomy tube for her nutrition and is trach-dependent; the latter requires monitoring by a pulmonologist. She is on a vent and warm humidity when in bed and uses oxygen when necessary. Another tube in her body helps with the elimination of bodily wastes. Her bones are brittle from osteoporosis, and extreme care must be taken when transferring, changing clothes, or bathing. Transfers are done using a special lift and a special shower chair for her daily bath. Fourteen different medications help control her seizures, spasticity, urology, respiratory, and pain, and help deal with her osteoporosis.

Courtney has a team of four nurses, eleven doctors, and a supportive family who are committed to maximizing her health status at home. Courtney’s nurses have been with her for over four years in the home, and they can anticipate her needs.

As Courtney’s mom, I am very appreciative of the dedication of Courtney’s county case worker, county staff, and Arc for helping us with our Consumer Directed Community Supports (CDCS) waiver up to this point.  Virtually all of Courtney’s CDCS funding is used for support in the home.  Courtney is happy and well cared for, only because of the in-home support benefits guaranteed with her CDCS waiver.  I, in turn, have been able to work.

Because of CDCS, she has been able to live at home in a warm, loving, caring, clean, and thriving environment and have consistent nursing staff.  She has thrived to her fullest potential and has surprised the medical books and her family – living 10 years beyond her life expectancy.  Our home is completely handicapped accessible, anticipating Courtney’s future and enabling us to keep her at home. With CDCS, her future is very encouraging.

In 2004, we received $140,000 for CDCS.  This may seem like a substantial amount of money, but this sum would be much higher if she were placed outside of our home.  We were told earlier this year that our budget for 2005 would be $47,000 – a 66 percent cut.

If this proposed cut were finalized, 2005 means a scary future for Courtney. We would have to fire three nurses to stay within this budget.  Courtney’s health would be jeopardized.  If I were to provide the services myself, I would have to quit my full-time job, forfeit my health insurance, and risk financial devastation. The cost of maintaining these services would force me to sell our home and deplete years of savings set aside for the family’s retirement.

As a family, we will do what ever it takes to keep Courtney at home and provide an environment that will allow her to live happy, healthy, and secure.  Please help us reverse those changes in CDCS that will have horrible consequences for families like ours.

Pennie Hight
Farmington, MN