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Assistive technology (AT) is a device or service that helps increase, maintain or improve functionality. AT can range from incredibly high-tech equipment such as exoskeletons that help people walk to low-tech devices like grabbers that let people reach and retrieve objects. AT can also be as simple as a laminated piece of paper with a selection of pictures that allow people with communication challenges to express themselves by pointing at different images. No matter who uses AT, the goal is to enhance independence by boosting functional capability.
While most people may think of assistive technology as hardware that helps people with physical disabilities, AT can also improve quality of life for people with intellectual and developmental disabilities (IDD). Communication devices, smart home modifications, and direction-finding maps or apps are among some of the assistive technologies often used by people with IDD.
There are approximately 6.5 million people with IDD living in the United States. For these individuals, assistive technology can be purchased directly, funded by insurance, provided by schools or non-profits, or acquired through Home and Community-based (HCBS) waivers. HCBS, provided through the Centers for Medicare & Medicaid Services (CMS), are designed to help people stay in their homes and communities who would otherwise live in institutions.
HCBS are provided through what are known as HCBS waivers. Some waivers cover services defined by age or diagnosis – for example older adults or people with autism. Other waivers can provide specific items like assistive technology. States must apply to CMS to renew or add to their waiver programs. People must apply to receive a waiver. Each state has a set number of each of its waivers available, determined by projections made during the application process. If projections fall short of the number of people who need waivers, there can be long waitlists to get a waiver.
For people with intellectual and developmental disabilities, HCBS waivers are a major source of funding for assistive technology. However, because of differences in the existence and availability of AT-related waivers across states, there are inherent disparities. “There is a lot of unmet need for assistive technology among people with intellectual and developmental disabilities, and affordability and lack of availability through insurance and HCBS is a major driver of that unmet need,” says Carli Friedman, PhD, Director of Research at the Council on Quality and Leadership. Some of Friedman’s research focuses on analyzing HCBS waiver programs, state policies and practices and how they support people with disabilities.
In 2023, Friedman published two papers on AT for people with IDD. She found that variations of availability of HCBS waivers for assistive technology exist across states and mean that some people who may benefit from AT can’t get it through waivers. She also found that a well-intentioned program to address this gap wasn’t as successful as hoped.
In a paper published in October 2023 in Disability and Rehabilitation: Assistive Technology, Friedman reports that only a small number of people with IDD were projected to receive AT through HCBS waivers.
“Out of the roughly 900,000 people with IDD who were projected to receive HCBS in fiscal year 2021, only about 3% were projected to receive assistive technology,” says Friedman.
She looked at state HCBS waiver programs in fiscal year 2021. That year, 71% of states had waivers that included AT for people with IDD. But most state projections of the number of people who would receive AT were very low. Projections varied by state, with New Jersey projecting 25.0%, Texas 19.7%, Oklahoma 11.8% and Ohio 13.8% and Montana, Idaho, Oregon, Florida, Nevada, Alaska, Michigan, Indiana and Georgia projecting 0%.
“States have a lot of flexibility in designing their HCBS waivers, which is a good thing because they can customize programs to suit the needs of people in their state,” Friedman explains. “But it can also produce disparities when needed services are not offered in a state or by making it difficult for people to move to different states where services they need may not be available. This is why interstate differences are important to study.”
Friedman speculates that some states had such low projections for how many people with IDD would need AT because people may be getting assistive technology through sources other than HCBS waivers, such as other state programs or through vocational rehabilitation services. States also have a limited amount of money to work with, and other types of services may take priority over assistive technology and that is reflected in their HCBS waivers. “States also have a limited pot of money to work with and other services, like personal care for example, might take priority over AT,” Friedman notes.
There also hasn’t been much research about AT in HCBS, Friedman explains. She says her research is one of just a handful of studies to examine AT service provision for people with IDD in HCBS waivers in the last 20 years.
The fact that availability of AT through HCBS waivers for people with intellectual and developmental disabilities could be better has been known for quite some time.
To improve access, starting in 2018, Ohio implemented Technology First, and was soon followed by other states. Technology First states are committed to prioritizing access to technology for people with intellectual and developmental disabilities through policy and systems change. Today, 16 states are Technology First states (Alaska; Colorado; Connecticut; Delaware; District of Columbia; Hawaii; Indiana; Maryland; Minnesota; Missouri; New York; Ohio; Oklahoma; Pennsylvania; Tennessee; and Washington). Illinois is not one of the states implementing Technology First as of October 2022.
“I wanted to see if Technology First initiatives did what they were designed to do: improve the allocation of technology for people with intellectual and developmental disabilities,” says Friedman.
In a July 2023 paper in the Journal of Applied Research in Intellectual Disabilities, Friedman reports that the effects of Technology First may have yet to impact HCBS service provision. Friedman found that Technology First states were significantly more likely to offer telehealth service delivery for HCBS for people with intellectual and developmental disabilities than states without Technology First – 69% compared to 28%. Not many other significant differences were seen between Technology First states and non-Technology First states.
“There weren't significant differences in how states were implementing technology based on Technology First status in HCBS,” says Friedman. “That doesn't mean that Technology First isn't a useful mechanism to commit to, it could just mean that we're not seeing the change yet. It could also mean that states are providing technology in ways other than through HCBS.”
Improving access to assistive technology is an important endeavor, says Friedman. “Assistive technology can really help improve people's quality of life across a variety of different outcomes,” says Friedman. “And when technology can help people experience better outcomes, they maybe need fewer of other kinds of services. For example, if AT allows someone to be more independent, they may need less support from direct support professionals, of whom there is a major shortage. I’m not saying we should take away people’s supports if they have AT, but maybe we can shift to different types of services and supports.”