SALT LAKE CITY (ABC4 News) – There are more than 3,200 Utah families on the wait-list for help caring for a loved one with a disability. The funding comes through the Division of Services for People with Disabilities (DSPD), and for some, the wait-list is now 10 years long.
Fred Tripeny is 15 and has a complex medical history; he was diagnosed in the womb with hydrocephalus and eventually was diagnosed with cerebral palsy and autism. His mother Mary Tripeny is his primary caregiver. She explained, “He’s developmentally delayed which is frustrating but he’s a dear to be around, he brings joy to everybody’s life.”
After five years of waiting, Fred is number 243 on the waiting list.
Mary said, “Funding is valuable because it allows you to access community resources that you can’t access otherwise, behavioral health therapy, respite care, community respite care.”
Without help, Fred’s family has had to pay for a lot of his care out of pocket. They scraped together almost $30,000 for a year at the Pingree Autism Center, $5,000 for the ramps outside their home, thousands more for help from in-home CNAs a few hours a week, and they’re saving for a new shower because Fred has outgrown their home bathing set-up.
Mary said of her son and others like him, “Their needs are overwhelming and if you have a program like DSPD it keeps your family together and the best way to care for a loved one is to care for them in your home.”
DSPD currently has 3,286 people on its waiting list. The average wait time is five and a half years, but the person waiting for the longest has been on the list for 27 years. The services vary from simple in-home care a couple of hours a week to full 24-hour care and life-skill training. All of the services are specialized, limited and very expensive.
Senator Allen Christensen chairs the Social Services and Health and Human Services Committees; he said, “People accuse me of having no heart; I do I just don’t have a bottomless checkbook.”
Each year DSPD gets about $3 million in new funds made of state dollars and a federal match, which translates to about 150 people being taken off of the waiting list.
Senator Christensen explained that while some people are granted a full spectrum of care, others only receive respite care. “85% of any new money goes strictly to the top people, the most critical ones who are unfortunately also the most expensive. 15% of any new money goes to the waiting list on a random basis. I can take maybe 10 new people that are most critical and 140 respite care people.”
Mary Tripeny says she’s tired of the excuse that there’s not enough funding to cover all disabled individuals.
“Perhaps we need to find a way to make it a larger pot of money. I think it’s disgusting in a state that claims to be all about families that families are going to be torn apart because they can’t care for their children.”
The clock is ticking on both sides for Fred. If he can’t get DSPD funding by the time he’s an adult, his family will be forced to move to a state like California or Minnesota that fully funds a similar program.
Mary pleaded, “Write to your senators write to your congressman to fully fund this program because it’s desperately needed.”
As of July 1, 2019, the needs assessment for DSPD now takes into account the amount of time a person’s been on the waiting list. Visit the DSPD website to apply for funding or update your assessment.