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

Annie is a 23-year old young adult, born with spina bifida. She is paralyzed from the chest down and uses a wheelchair. Annie has a history of significant choking spells associated with eating and drinking that require constant supervision to reduce the risk of aspiration. Annie has gross motor delays, fine motor delays, and developmental delays. She sees with monocular vision, which affects her peripheral vision and her visual acuity for driving her wheelchair.

Annie is dependent on others for all of her health and safety needs including using the bathroom, bathing, grooming, dressing, eating, range of motion, and the ability to respond in an emergency. She needs her physical well being closely monitored and coordinated in all areas including nutrition, physical exercise, therapy, health care, medication and safety. Annie is dependent on her parents to manage her home. They provide support for her in the areas of shelter, food, clothing, paying bills, assistive technology, transportation, adaptive equipment needs and upkeep in her home.

Annie’s waiver is primarily used to meet her medical and staffing needs. Our goal for Annie has always been maintaining her health, safety, emotional and physical well-being and providing her the opportunity to grow to her fullest potential. We created a community-based program instead of sending her to a Day Training & Habilitation facility.

Annie’s CDCS waiver did not provide for this program. Annie’s community program does not isolate, separate or limit Annie’s potential. It assists her in developing functional daily living skills that can help her become more independent. Annie wants to be at home with her family and included in her community.

Annie’s parents manage Annie’s waiver budget. Bill, Annie’s father, has been employer of record for Annie’s staff, so 10% of her CDCS waiver money that would go to a middle provider can be saved and put towards necessary staff, goods and services for Annie. Annie’s CDCS waiver budget of $210.67 per day has been cut 50% to $106.38. This amount includes her day program and is the amount proposed when the Department of Human Services wanted to cut her waiver budget through “rebasing.”

The reduced rate of $106.38 per day will most likely force Annie off the CDCS waiver. Formal supports will obviously cost more, and Annie will get fewer hours for staff and no goods or services. The reason we chose CDCS was because of the difficulty of hiring dependable staff at the wages available under formal supports. Annie’s medical needs require her staff to have advanced, specialized nursing skills.

We are unsure if formal supports will even cover the necessary hours and will need to seriously consider breaking up our family and putting Annie in out-of-home placement.

Andrea McKee
New Brighton, MN