Parents of special needs children face waitlist, scarce information for long-term care

Julie Cannon is the adoptive mother of Christopher, a 17-year-old who has intellectual disabilities due to prenatal issues and complications at birth. She and her husband, like many parents of special needs children, face a unique challenge in raising him knowing that there will soon come a day when they may not be able to provide adequate care. Many special needs children fall into a state of limbo as young adults after graduation from high school when they may not be equipped to handle independence, but are no longer eligible to fit within the confines of the education system.

“In many ways, he is like any other 17-year-old, but, for math and reading, he is on a fourth-grade level,” the Texas mom told FoxNews.com. She noted that caring for him is getting increasingly more difficult as he seeks more independence.

Many privileges, like driving, cannot be afforded to Christopher because of his disability, which has caused a rift between the teen and his parents.

“There would be a lot of arguing and sometimes he would run away at night,” Cannon said. As instances like this became more common, her concern for his safety and well-being grew.

“I get worried about leaving him home alone. He knows how to cook, but he may forget to turn the stove off,” she added.

The problem with government-funded programs

Mickey Atkins, the president and CEO of D&S Community Services, which provides community support for people with disabilities in Texas, Tennessee and Kentucky, is looking to help parents like Cannon by raising awareness about a little-known government program called 1915(c) Home and Community Based Services (HCBS), which is paid for by Medicaid.

The program provides support for intellectually disabled children, offering caretakers to a patient up to 24 hours per day, seven days per week, depending on the level of the disability. HCBS allows for patients to live in their own home, but they are under the supervision of a caretaker. The service is paid for by the government, but room and board are not provided. Supporters say HCBS helps integrate intellectually disabled people into a normal, functioning life.

However, depending on the state, the waitlist for HCBS can be up to 10 years, for which Atkins blames lack of funding.

“States are unwilling to put enough money into the program to support the people who need the services,” Atkins told FoxNews.com. He also blames the long waitlist for the hesitation medical professionals may have in recommending the program.

“Why would you market it when you can’t help everyone in line right away? It’s a catch 22,” Atkins said.

When asked for comment, a Texas state official said that the local government has taken active steps in addressing the waitlist, such as passing legislation to make more services available to people previously not receiving any.

“Also, during the two most recent sessions, the state Legislature has funded an additional 8,786 slots in program with interest lists,” a Texas Department of Aging and Disability Services spokesman told FoxNews.com. “Through the Money Follows the Person (MFP) Demonstration, Texas is also committed to allowing individuals to relocate from institutional settings, such as nursing homes and intermediate care facilities for an individual with an intellectual disability or related conditions (ICF/IID), into the community without first registering on an interest list.”

Atkins said another problem is that information about programs like HCBS is not being disseminated to families of children with special needs. Christopher’s mother agrees.

“We saw therapists, psychiatrists, teachers, doctors, occupational therapists and no one told us about HCBS housing,” said Cannon, who is also trying to raise awareness for the program.

Because of the long waitlist, Atkins and Cannon are trying to let parents know they have to act fast because of the peace of mind it may bring.

Getting ahead of the curve

Another Texan, Michelle Hirschfield, is the mother of a 7-year-old boy was diagnosed with autism when he was three. Hirschfield heard about the Medicaid waiver soon after her son’s diagnosis at a special education meeting. Aware of the long waitlist and not wanting to waste time, she and her husband signed up for the program to guarantee that help will be there should they need it down the line.

“We don’t know what he would be like in 10 years, so we put him on the waiver. In a dream world, his name would come up and we wouldn’t need the benefit,” Hirschfield told FoxNews.com.

Atkins estimates that the cost of these services out of pocket range from $40,000-to-$100,000 depending on the extent of the help needed.

A research professor at the University of Illinois at Chicago, Dr. Matthew Janicki  told FoxNews.com that there is no straight course of action for those who are looking for affordable and more immediate assistance, but there are options that can be explored.

"There are group homes or supported apartment programs that would accept adults with intellectual disabilities," he said.

These may not offer the same autonomy as supported HCBS waiver housing, but they can offer the 24/7 care that family members might be seeking.

Janicki also highlighted options for families of people with disabilities to pool their resources together to offer help.

"There are programs that can help families come together and share any costs and responsibilities that come with caring for a someone with special needs," he said.

For navigating through the many options, Janicki recommended that family members reach out to their local developmental disabilities association.

While there are different approaches to caring for the nation’s mentally disabled, these parents and professionals are looking to spread knowledge.

“My goal is to help schools, teachers, councilors and let them know that these programs exist,” Cannon said, referring to the HCBS program.