Utah families who have children with developmental disabilities fear how their services will be impacted by the 2010 legislative session. Currently 4,500 people receive services through state Medicaid waivers, which enable them to live in their communities rather than institutions. Community services such as assisted living, supported employment and day care are less expensive and more desirable.

Due to the lack of funding approximately 2,000 people in Utah are on a "waiting list" for services. The disability community has never received the adequate funding required to provide needed services while the disability population continues to grow. Some people have been waiting for services for five, 10, and even 15 years. Every state dollar the Legislature spends is matched by four federal Medicaid dollars. As a result those dollars create 5,000 service provider jobs. These jobs build our economy, especially in our rural communities.

Developmental disabilities such as cerebral palsy, Down syndrome, autism, and intellectual disabilities impact 2 percent of the population. These disabilities dramatically impact a person's life often requiring lifelong support. People with these disabilities are society's most vulnerable citizens and it is our moral obligation to serve them. The families of individuals with developmental disabilities worry about their loved one's health and safety, and are especially concerned about what care will be available when parents die.

Disability doesn't discriminate. It happens in wealthy, middle class and poor families. Disability impacts the entire family -- parents, siblings, and extended family members. Divorce rates soar as a result of the extra stress involved from care giving and the associated significant financial impacts. Many legislators expect families to bear the full burden of these intense caregiving needs without any government support. After families exhaust their own resources, Medicaid waivers for community services must be made available or more expensive institutional care will be required.

Most people don't understand the extent of care that a family member with a developmental disability requires. "Respite" is caregiver relief and families need a break from care giving. Imagine caring for a child who never grows out of diapers, doesn't walk, doesn't talk, and requires total lifetime care. Services paid for through a Medicaid waiver are not "welfare," they are "a hand up, not a handout."

Families who receive this support work and pay taxes but desperately need extra help to care for their family member. A compassionate society must understand the emotional and financial burden that caring for a family member with a disability involves.

Small private companies who contract with the state to provide disability support have taken pay cuts rolling funding levels back to 2007. These providers now face another projected 5 percent cut from the 2011 governor's budget. These private service providers are small businesses on the brink and many have already closed their doors. Continued cuts are destroying our community provider infrastructure.

Yes, Utah is in an economic downturn, but can we in good conscience turn our backs on families coping with disability? Utah prides itself in being family oriented, and funding disability services preserves families. We will continue to see an increase in abuse and neglect of people with disabilities as the lack of funding for services increases.

People's needs do not go away. Funding disability services is not a luxury. A compassionate and responsible society must provide for these basic human needs. I am asking legislators to make funding Medicaid waivers for disability services a priority. Stimulus money backfilled cuts from last year's budget, but those dollars will run out December 2010. Can we accept what happens to families if additional cuts to disability services are made next year?

Claire Mantonya is executive director of the Utah Developmental Disabilities Council.