Over the next several years, state legislation is changing the way nonprofits such as Reach Unlimited—the Cy-Fair group dedicated to helping individuals with intellectual and developmental disabilities—are managed and funded.
Public school systems across the state are required to meet the needs of students with IDD at no cost to their families. However, after high school graduation, many family members are forced to quit their jobs to provide supervision for loved ones, Reach Executive Director Lauren Black said.
Based on family income and condition diagnosis, individuals can apply for Medicaid waiver funds after they graduate, Black said. This money can help people afford the kinds of programs available through organizations like Reach, such as adaptive aids, day habilitation, home modifications, nursing, residential assistance, specialized therapies and supported employment.
However, due to a shortage of funding, many people who apply for the waivers do not receive them, Black said.
“What is usually a happy celebration becomes a scary time for families when they have a loved one with IDD graduating out of the school system,” she said. “If an individual has not been awarded a ‘slot’ for the Medicaid waiver funds, the family is on their own to figure out how to pay for services.”
Those who receive the waiver can typically arrange for services to start soon after graduation. According to the program’s website, 21,000 Texans are receiving waiver services, but more than 156,000 are currently waitlisted.
In Cy-Fair, 250-350 additional graduates per year need the services that Reach Unlimited provides. These numbers do not account for general population growth, Black said.
Changes to the system
Passed in 2013, Texas Senate Bill 7 decided acute and long-term Medicaid services—including those for individuals with IDD—will be under a single care system. By 2020, the Texas Department of Aging and Disability Services will be absorbed into the Texas Health and Human Services Commission in an effort to contain costs and improve health care, officials said.
Before this transition, services were supervised by the Texas HHSC, the Texas DADS and locally by the Harris Center for Mental Health and Intellectual Disabilities. Harris County clients receiving Medicaid funding were required to choose one of three care providers that acted as insurance companies for clients with special needs, Black said.
The U.S. Center for Medicaid and Medicare Services also changed policy to rule out settings in which individuals are isolated from the surrounding community in day programs. States must comply by March 2019.
Intended to promote choice and increase community integration, this change will be difficult to implement under the current funding conditions, Black said. At Reach, staffing would need to quadruple to maintain the health and safety of clients, she said.
With Reach already raising $1,800 per client per year through its own efforts, this change could eliminate programs altogether without increased funding from the state, Black said.
“When there is a lack of funding, people go unserved,” Black said. “From the bigger picture, when monies are not allocated to the waiver programs to address the needs of this section of our population, they often times show up in other parts of community services like the judicial system, homeless population and psychiatric facilities.”
At Reach Unlimited, Black said the staff must fundraise the difference between the current funding structure and the actual cost of delivering services. If funding was not an issue, the nonprofit would like to grow to provide services for more individuals, she said.
“Our belief is if legislators can meet some of the real people and hear their stories, it will give them a better perspective and understanding when thinking about funding, program needs of individuals and possibly the best ways for those funds to be channeled to maximize the benefit to individuals with IDD,” Black said.