Understanding Medicaid-Funded HCBS Waiver Programs
- Harvey Zhou
- May 17
- 5 min read
TL;DR: This paper seeks to determine if Medicaid-funded HCBS waiver programs (meant to help individuals with I/DD live in their homes and communities vs. in government institutions) are helpful. After looking at past papers, it seems that it IS helpful: stronger economy & is cost-effective, better health outcomes for those with I/DD, and overall improved family quality of life.
Key terms
Systematic review
Medicaid
Home and Community-Based Services (HCBS) waiver program
Intellectual and developmental disabilities (I/DD)
Institutionalized
Introduction
This paper looks at all the past research, consolidates the relevant studies, and reviews them (this is called a systematic review) related to the effectiveness of a Medicaid-funded program that supports adults with intellectual and developmental disabilities (I/DD) called “Home and Community-Based Services Waiver program”, or HCBS waiver program for short. They looked at three main areas: cost-effectiveness, health outcomes, and family impact.
What is I/DD? The category of intellectual and developmental disabilities encompass a range of conditions, which may include autism spectrum disorder (ASD), cerebral palsy, Down syndrome, and Fragile X syndrome. What is Medicaid? Medicaid is a government program that helps to cover medical costs for people who have limited income and resources to pay for their healthcare. It also helps to support people with disabilities by not only providing this healthcare support but also essential services (at either free or significantly reduced costs). What is HCBS? A lot of adults living with I/DD have historically been institutionalized, meaning that they live in segregated government-run care centers and facilities, like Intermediate Care Facilities (ICFs). Although these do provide the basic necessities for living (like shelter, food, and a place to sleep), these centers often lack deeper support (like social activities, opportunities to work and grow, or avenues for community service). This context is important: Medicaid-funded HCBS aims to combat this by offering an entirely different path for adults with I/DD. Rather than live in institutions that can feel cold and unintegrated, adults can be supported in their own homes and communities through medical and long-term care services. Some examples of HCBS:
What do cost-effectiveness, health outcomes, and family impact mean in this study?
|
Methods
This paper does a systematic review, which involves deeply and comprehensively sifting through databases of past literature, pulling out the research studies related to their question (the effectiveness and overall impact of Medicaid-funded HCBS), and then reading through and using only the studies that match their specific requirements for analysis (called “inclusion criteria”). After compiling a list of useful and relevant studies, the researchers then analyzed this information, looking at the three main areas mentioned earlier (cost-effectiveness, health outcomes, and family impact).
Results & Key Findings
Cost-effectiveness
Yes. HCBS can be more cost-effective than institutionalizing those with I/DD in the long-term.
One study in particular reviewed the economic impact of HCBS. This study looked at one specific program: the Missouri’s Partnership for Hope (PfH) HCBS, which worked to prevent or delay individuals with I/DD who can live well using community services from being institutionalized. The researchers of this study found that this program contributed to over 435 jobs for those living in Missouri as well as over $22.2 million to Missouri’s gross state product (GSP).
Why are jobs and a large GSP good for the economy? More employed individuals means individuals feel more financially stable, which means more spending! More spending means higher demand, which boosts the economy. GSP is a measure of a state’s economic health. A higher GSP means a strong state economy. |
The theory behind it:
Although it seems costly to provide personalized care to support each individual to live in their community and home, HCBS can avoid the large costs of institution maintenance (like paying around-the-clock trained care members, building and maintaining “one-size-fits-all” medical units, paying administrative staff to run the institution…). In institutions, each individual may actually cost more to the government than if they were to live in their own home or community.
This individualized support allows for an increased focus on preventative care and proactive health maintenance. It’s much harder to track each individual’s health in an institution, where activities and check-ups are a bit more standardized or streamlined. This emphasis on each individual’s health means that they can rely on emergency services and acute care less, and that problems can be treated early. This increased health independence often means an overall cheaper bill for the government: fewer expensive emergency visits for problems that could have been treated much earlier or prevented altogether.
Health outcomes
Positive. Two studies (Leslie et al., 2017a; Leslie et al., 2017b) found that families who used the Medicaid HCBS waiver program were more able to help their children with ASD. Parents were able to meet more of their children’s needs while being more likely to stay employed. Another study (Mandell et al., 2012) found that there was a lowered risk of those with ASD (specifically children, adolescents, and young adults) having to experience psychiatric hospitalizations.
The theory behind it:
As mentioned earlier, more personalized support means more proactive health management and preventive care. This means that individuals with I/DD are able to more often prevent health problems before they come up (maybe through better check-ups, better diet/eating with more personalized assistance, stronger community for mental health support), chronic conditions can be better managed, and that any urgent conditions or problems can be treated more quickly.
Family impact
Positive. Two studies (Eskow et al., 2011; Eskow et al., 2014) in particular looked at Maryland’s Medicaid HCBS waiver program, which surveyed children with ASD and their families. After analyzing the survey responses, they found that families that used this waiver program reported an increase in their quality of life, an improvement in the child’s independence and living skills, and an improvement in their employment status.
The theory behind it:
HCBS supports not only those living with I/DD but also their families – as its services include day centers (where adults with I/DD can be dropped off for various activities for the day) and in-home health aides (trained professionals who can care for the individual one-on-one), family members who would usually be responsible for caregiving can have more time for themselves. This relief means lowered stress, burnout prevention, and increased self-care. Family members can now remain employed more easily while focusing on familial relationships over worrying about the demands of caregiving.
Conclusion
This systematic review looked at the methods and results of various studies and discovered that Medicaid-funded HCBS waiver programs are very helpful! They result in various benefits for not only the individuals receiving support and their caregivers but also the economy. HCBS is cost-effective, leads to positive health outcomes, and has positive family impact.
It is recommended to continue to research the effects of HCBS waiver programs to increase its effectiveness even more while increasing its range and depth of support.
The original article, United States Medicaid Home and Community-Based Services for People with Intellectual and Developmental Disabilities: A Scoping Review , was written by Kiley J McLean, Allison M Hoekstra, & Lauren Bishop
This simplified article was written by Harvey Zhou.