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

D. is our son, a 23 year-old, much-loved young man who lives with us, his parents. He was born with severe hydrocephalus which prevented normal development of his brain. His disabilities include severe mental retardation, cerebral palsy, severe scoliosis, seizures, blindness, and an inability to walk, talk, or protect himself. His needs are similar to those of a two-month-old infant. He has a shunt from his brain to his heart which has been replaced at least 17 times. He also has a gastrostomy tube for feeding.

In spite of the above disabilities, D. is an extremely engaging and personable child who has the ability to smile, laugh, kiss, and vocalize an uncanny similarity to "I love you" and "Hey, Mom."

We adore our son and have opted to keep him at home with us as long as we are able to care for him. Physical care is difficult. D. weighs over 90 lbs. and must be lifted from his wheelchair, from his seating, from the sofa, from his bath chair, from his bed, etc. I am 55 years old and still can do this in spite of a herniated disk. My husband is 56 and has already suffered a heart attack, but he still can carry our son small distances. We are aware that if our son were in a group home, his care would be compromised, and the cost of his care would also be much more than his previous budget, which was $59,000 including $22,000 for his day programming.

His new budget will be $39,000 -- $17,000 for in-home care and $22,000 for the day program.

As stated, our goal is to keep our son at home with us as long as possible. This goal has been possible due to one of us not working outside the home, as well as hiring and paying part-time aides and LPNs to physically help with his care. $17,000 may seem like a lot of money, but in health care, it is barely enough for six months of care. This does not include other costs for equipment or adaptations. The traditional waiver program which we used before CDCS provided him with more expensive and untrained and inefficient care. With CDCS we have been able to hire and train our own excellent aides.

We are fully aware of the need for budget cuts. However, we do not understand the drastic reductions in a program which, in the long run, would cost the state much less by enabling families to keep their children with disabilities at home and in the community, rather than isolating them in much more expensive group homes.

Sincerely,
A Worried Minnesota Mother