NC must end its cruel and unjust denial of services to people with intellectual and developmental disabilities

While state leaders idle, thousands remain stuck on a waiting list for decades

A few weeks ago, I felt devastated when I read about the death of Ruby Loftin. Ruby was a beloved community member, sister, and daughter who died at age 64 after waiting in line (unsuccessfully) for more than 19 years to receive services provided through what’s known as the Medicaid NC Innovations Waiver – an initiative that serves people with intellectual and/or developmental disabilities (I/DD). Having never received those services that support individuals in living an integrated life in the community, her family will never know what opportunities – some potentially life-saving – she could have enjoyed.

A massive challenge for any family

Ruby’s death spoke particularly to me because I am a sibling of someone with disabilities. My younger brother, Van, was diagnosed with autism in 2002, the same year that Ruby signed up for the Innovations Waiver waiting list.

Like many other families, my parents were overwhelmed at the time – both by my brother’s diagnosis itself, and the tremendous amount of effort they quickly realized it would require to get him the supports he needed and deserved. My mom even had to switch from working full-time to a part-time job.

Fortunately for us, my family was in a comparatively advantageous position to support my brother. In addition to being white and well-off, both of my parents are physicians. With their expertise and continuous, exhaustive efforts, they were able to get him help.

Van was diagnosed and started therapy early, which research has shown can make all the difference for a child’s development. By 2004, my brother was an NC Innovations Waiver recipient – a status Ruby and thousands of others had been waiting to reach for years. This was enormously beneficial. Without the services provided under the waiver, my parents were not even sure that they, a pair of doctors, could afford all the services my brother needed.

Throughout my school years, I remember coming home each day to greet my brother and his Arc support worker, who had picked him up from the bus and was helping him with his homework. In a family of two busy doctors with two other teens, the support workers helped my brother to grow and learn. Instead of having to quit work completely to care for my brother, like many I/DD parents without the waiver, my mom was able to continue working part-time to provide for our family.

One of my brother’s favorite and most beneficial activities during these years was venturing out of our home with his support workers into the community. Because of that experience, he was able to learn important skills about how to navigate society, and most importantly, was able to make friends and be included in a world outside his own family. Wherever he went, people at his favorite spots got to know him by name, greeted him, and were happy to see him. These vital daily lessons would not have been possible without the Innovations Waiver.

A desperate need for better funding and improved outreach

While the benefits of the Innovations Waiver to health and well-being are plainly obvious, confirmation can also be found in the data. Research shows, for example, that people receiving these services have 31% fewer emergency room visits per year than I/DD individuals not receiving services.

Sadly, it wasn’t until I started researching the subject at the Duke Margolis Center for Health Policy, that I realized that Innovations Waiver assistance is something that most people with I/DD in our state do not receive. In fact, our team at Duke found that there are more people on the waitlist for the Innovations Waiver (15,000) than there are who receive it. This, even though current law purports to prohibit such a list – an inconvenient fact that the state only evades by terming the list a “registry of unmet need.”

This inequity is only compounded by the fact that Black, Hispanic, female, rural, and young (<18 years old) populations are all less likely to receive a waiver.

Fortunately, there are things we can do to address this outrageous and unjust situation. Topping the list: lawmakers should appropriate the funds necessary to reduce and eliminate the waitlist.

North Carolina senators recently proposed a bill that would add 1,000 slots, but with so many waiting for help, and even more individuals who have not applied potentially eligible, that proposal would not come close to addressing the unmet need. A better approach put forth by advocates at Disability Rights North Carolina would add 2,500 waiver slots each year until the waitlist has been eliminated. This would steadily reduce the waitlist while allowing time for regional administrators to adjust to the increased waiver load.

Work must also be done to alleviate the disparities in waiver distribution. While waivers are supposedly distributed proportionally across the state, those living in rural areas are less likely to receive a slot. This fact suggests that beyond allocation, disparities exist in awareness and the ability to apply for waiver slots.

Adoption of a single, streamlined and well-publicized process for families – even those of modest means and education – to learn about and apply for the waiver, would also be beneficial.

This past May, Van graduated high school. Soon, he’ll head to a community college program for people with I/DD, accompanied by his support worker. We are all so proud he has made it this far, and it might never have happened without the support of the Innovations Waiver.

All North Carolinians with I/DD, regardless of their family background, deserve the same chance for success and fulfillment. It’s long past time for state leaders to provide it.

Maddie Fowler is an intern at the Duke University Margolis Center for Health Policy and a past Senior Advisor with the Duke Disability Alliance.