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

I am writing this letter on behalf of our 11-year-old son, Taylor, who has severe disabilities. He cannot speak for himself, so we will be his voice. It is almost impossible to explain the extent of Taylor’s needs, and even more impossible to explain the magnitude of how he will be affected by the devastating cuts to the Consumer Directed Community Supports (CDCS) we receive. Taylor is legally blind, has several conditions which make him medically fragile, uses a wheelchair, and cannot communicate his needs. Taylor is total care, 24 hours a day.

I personally suffer from a debilitating form of fibromyalgia and cannot care for Taylor myself. My husband and I rely entirely on CDCS funding to pay for staff. Staff is not a luxury in our family; it is an absolute necessity.

This year has been the most difficult year we have experienced since Taylor was born. He missed over 100 days of school and was hospitalized three times. He developed two new life-threatening illnesses that required 24-hour care. There could not have been a worse time for an unfounded budget cut.

In May, the State PCA assessment increased Taylor’s budget to 24 hours a day from 18, after updating his medical complications. Three months later, we received the notice cutting Taylor’s CDCS budget by 75%. His daily budget went from $359.02 to $102.20. This has created a crisis. Taylor could die without proper care.

These cuts are devastating to our family as well. We use almost every dollar for staff support to keep Taylor at home and not in an institution. If he were institutionalized, which would be hospital level care, the cost to the state would be more than triple his current budget.

We couldn’t get staff when we only had PCA services through an agency. They only pay $8.50 per hour, and yet they charge the state between $15 and $25 per hour. We pay our staff $15 per hour, and they are trained like nurses. Getting nurses to take care of Taylor (which is impossible due to the nursing shortage in this country) would cost $45-$60 per hour.

We do not have a handicapped-accessible vehicle. We cannot afford to buy a van yet, and our hopes for converting a van, when we can afford one, have vanished with the budget cut. My husband still carries Taylor up and down the stairs and into our truck; Taylor weighs 85 pounds.

We have not been able to use his waiver budget to buy other necessary adaptive equipment, because his level of care uses almost every dollar. What isn’t used for staffing is used on special dietary requirements that support his weakened immune system, as well as consultation services to a licensed Naturopathic Doctor endorsed by Taylor’s pulmonologist.

We are exhausted. Taylor is an angel, and we are blessed to have him in our lives. However, life is extremely difficult when you’re caring for a child you love, who has such severe disabilities and major medical complications.

We cannot understand how anyone could have calculated the new budget if they knew anything about Taylor and his needs. The news of this budget cut was emotionally devastating.

The only way we can get through a day is because we have Taylor home with us, we have each other, and we have wonderful loving competent staff, which we are in jeopardy of losing. Please help us help Taylor.

Lenni Garin
Rockford, MN