Too many people with intellectual disabilities and autism are waiting too long for treatment.

That was the consensus of a House Democratic Policy Committee hearing held July 24 at Lehigh Valley Hospital-Muhlenberg in Bethlehem. The event, co-chaired by Pa. Rep. Jeanne McNeill, D-133rd and Rep. Michael Sturla, D-96th, featured testimony from county and state administrators, employees and doctors. It was one of a series being held across the commonwealth.

“Quality human services programs are a vital necessity for the disabled so that they can effectively function on a day-to-day basis,” McNeill said. “I wanted to discuss the options that are available to them and if needed formulate a better plan across the state.”

While a complex subject, many patients with ID and autism are waiting for Medicaid funding, which is technically called a “Medical Assistance home and community-based waiver.” It’s essentially the state’s Medicaid program, which uses a combination of federal and state money. It pays for care in people’s homes or smaller-group settings, rather than isolated large institutions that were previously the commonwealth’s primary home for those with intellectual disabilities.

Governor Tom Wolf’s 2017-18 and 2018-19 budgets provided the most significant service expansion for people with ID and/or autism waiting for services, according to testimony during the hearing. The recently passed budget includes $74 million in new investments to help ID and/or autism individuals, and $16 million of those funds will enable an additional 965 people to access waivers to provide supports and services so they can remain in their homes and live an “everyday life.”

However, that amount only keeps the waiting list “flat” and does not decrease the numbers of individuals who are waiting, according to documents released at the hearing.

Sheila Theodorou, director of the bureau of supports for people with intellectual disabilities for the Pa. Department of Human Services, told legislators her agency provides services to more than 56,000 people. Intellectual disability is defined as a “permanent condition that affects a person’s ability to learn and function in daily life that occurs during the developmental period.” It occurs in about 1 to 3 percent of the population and encompasses various forums.

While the department is servicing a significant number of individuals, there are many who are not receiving services, Theodorou said.

“As of May 2018, there are 13,499 individuals with intellectual disabilities who have requested services,” Theodorou testified. “For the intellectual disabilities waiting list, 5,238 people are listed as an “emergency,” which is defined as needing services in the next six months. A total of 5,035 are listed as “critical,” defined as needing services within the next two years, and 3,226 are listed as “planning,” which is defined as needing services in more than two but fewer than five years.

Overall, DHS provides services “for more than 56,000 people with intellectual disabilities and/or autism,” Theodorou said. The vast majority of the individuals the agency serves – more than 74 percent – live at home with their families.

She added that over the years the services the department offers has evolved.

“Most individuals are living with their family, or in supported homes in the community,” Theodorou said.

For planning purposes, she told the committee that “the data suggests that our service expansion should focus on young adults who are transitioning or have transitioned from school as well as their families.” Adequate levels of support would allow these individuals “to live at home and obtain work more easily.” It would also keep costs down for their parents, who would not have to obtain more costly out-of-home services.

Another witness, Joshua Bridges, an administrator of mental health and intellectual disabilities with Lehigh County’s Human Services department, testified there are 163 people on the “emergency” waiting list, 101 individuals who are “critical” and 68 people in the “planning” category.

From the medical community, Dr Edward Norris, the chair of the department of psychiatry at Lehigh Valley Health Network, said the hospital “has one of the most comprehensive behavioral health programs in the area.” For reference, Dr. Norris said LVHN has treated more than 22,000 patients during roughly 123,000 visits or treatments during the last 12 months.

The hearing also featured testimony from parents of individuals with intellectual disabilities and/or autism. One parent, Thomas Carasiti, a resident of Pike County, has a 27-year-old son diagnosed with ID and autism. While Carasiti supported the governor’s budget, he said the amount allocated only keeps the total waiting list numbers flat and will not decrease overall those who are waiting.

“Ideally, we wanted the entire emergency list funded for $63 million or adding just .2 percent more to the entire budget,” he said. “Notwithstanding that amount, we should, at the very least, target all the aging caregivers which have been largely ignored for several years … The parent or parents in this age group must be filled with worry not knowing what support their loved one will have after they pass on.”

Other Lehigh Valley representatives in attendance were Michael Schlossberg,,D-132rd and Peter Schweyer, D-22nd.