Camille Pierce: Families of the disabled in Utah need more support

With the excess millions of dollars found by the Utah Legislature, it’s time to provide more help to families in Utah.

The attitude of many legislators is that church and family can meet the needs of families. After working for more than 31 years for the state of Utah’s Department of Human Services, I can testify that this is not accurate.

In my last position, prior to retiring from the Division of Services for People with Disabilities, I visited homes all across Salt Lake County. My job was to interview and assess people with disabilities to determine their eligibility for agency services and to learn of unmet needs. If they were determined eligible, their names were added to the waiting list. Legislators would question why the waiting list remained despite some funding increases.

People’s lives are not static.

A parent discovers their newborn child has a disability. Some parents notice as their child grows that the child is showing delays in motor, speech, intellectual or social skills. Healthy people become disabled by many types of accidents.

The thing with this population is that these severe disabilities do not just go away. There may be incremental improvements in functioning, but the disability will remain for the rest of that person’s life. Also, the responsibility for the disabled person remains for the rest of the parent’s or caregiver’s life.

When I asked an outgoing director of DSPD why they were leaving their job, it was because that person, “was tired of groveling for money from the Legislature.”

When I would meet with families, the caregivers talked not just about the day-to-day challenges and stresses of caregiving. They worried what would happen to the disabled person if they became unable to care for them or if they were to die. Some disabled people are lucky enough to have another relative to take on their care. But in most cases, it seemed that was not going to happen.

No church I’m aware of is willing to take on the lifelong cost and care of a disabled person. Yet, most of the disabled people I met would have been unable to live safely independently or to have jobs if not supported by paid coaches, trainers and professional staff.

Despite our efforts at prioritizing unmet needs with the waiting list system, it had a tendency to pit people’s and family’s needs against one another.

When a disabled aggressive fire-setting person endangering their family was at the top of the list for costly residential funding, other people and families’ names went down the list. Frustrated people were waiting years for any services. As you might guess, the divorce rate for families with a disabled person is substantially higher than the rest of the population.

If legislators truly care about families coming 1st in priority, then a substantial additional outlay of sorely needed money should be budgeted for DSPD and other state social service programs.

Camille Pierce, Holladay, is a retired social worker with a master’s degree in social work.