When Jo Beth Collier started out in intellectual or developmental disabilities (IDD) services in the early ’90s, things were good. Funds for group housing and new initiatives from Texas Health and Human Services (HHS) were almost always available. But just two years later, that all came to “a screeching halt” under former Texas Governor George W. Bush. “Everything really dwindled down,” Collier says.

A tightening of funds and a lack of mental health advocacy forced Collier, who was the director of IDD services at Lifepath Systems, and her coworkers to get creative. For professionals in mental health and IDD services, a change in administration can prompt layoffs and a loss of care for those who need it.

“It’s been one hit after the other,” Collier says. 

As of January, there are 16 people living in group homes at Lifepath, the local mental health authority in Collin County. Each of the residents lives with an intellectual disability and requires professional care. Day and night, Direct Service Providers (DSPs) perform tasks ranging from homemaking to aiding with homework and employment. When COVID-19 hit North Texas, the job’s difficulties came into focus.

The COVID-19 pandemic has affected the group home caregivers at Lifepath on a personal level, Collier says. Before Collin County released additional funds, the nonprofit could only afford to pay its caregivers $10 an hour. HHS provides $8.63 of the wages, which is about what a pack of cigarettes cost.

Many of the DSPs at Lifepath work two or three jobs to make ends meet. Before the pandemic, working more than one job didn’t affect the quality of care for group home residents. Now, it affects the health and safety of everyone involved. 

“Right now it is the lack of funding for a living wage that is a threat to not only the people we support but to the employees and their family members,” Collier says.

Mental health services challenge

The ebb and flow of mental health and IDD money in the U.S. started on its current track in the 1960s and ’70s. 

In 1965, Texas passed legislation to create community-based mental health and IDD facilities across the state. The act established a state department that centered around mental health and IDD. The intent of the legislation was to open up more care choices for people with IDD in Texas. Traditionally, people in need of low-cost services received care within the walls of a state school or institution.

As a result of the act, the state authorized community programs focused on mental health and IDD services. The act came on the heels of the Community Mental Health Act, which passed under President Kennedy in 1963. But a subsequent civil rights lawsuit proved there was more work to do. 

In 1974, the parents of a former resident of a state school, John Lelsz, sued the state of Texas for abuse, overuse of medication, inadequate medical care, and unsafe building conditions in a state school. As part of the case’s settlement, Texas poured more funding into creating local authorities and improving the overall quality of IDD and mental health services. 

As part of the community program initiative, counties gained greater control over how they handled behavioral health services. Their purview covered mental health, IDD, even substance abuse. Lifepath Systems has been providing services in Collin County ever since, and has been the local mental health authority for Collin County since 2015. Collier says the problem with funding shows up primarily in the roles of Direct Service Providers (DSPs.)

Texas Council, an advocacy group that represents Lifepath and IDD centers across the state, is also in the fight for higher wages.

“We’ve been working for a long time to address what we would call inadequate pay,” Executive Director Danette Castle says.

Inadequate pay

In December, Texas Council worked with IDD service centers like Lifepath to give feedback on how COVID-19 has affected them to the Texas Senate. Initially, Lifepath was not included in the circle of stakeholders that the senate selected for comments. But Texas Council and providers like Lifepath collected statements via email to send to the lawmakers. 

“Staff have to work a large quantity of hours and/or multiple locations in order to put food on their table, thus increasing their risk of exposure,” says Collier, who left the Lifepath center in early January to take a position elsewhere. “We are placing the staff and the people we support in jeopardy.”

The Texas Senate is expected to make future decisions with stakeholders’ feedback in hand. 

As of January 1, a temporary grant from the Texas Health and Human Services Commission has expired at Lifepath. Though the stimulus package passed by Congress last month might offer some respite to mental health authorities like Lifepath. 

The bill includes $4.24 billion for the Substance Abuse and Mental Health Services Administration (SAMHSA.) Of that, $1.6 billion is designated to be block grants for the existing community mental health services block program. 

But the issue goes further than how the state allocates funds. To make a larger change, Collier says there needs to be a shift in the narrative surrounding those with IDD. “We are the forgotten. In all of this process, there’s nothing that specifically addresses people that have intellectual developmental disabilities.”