What does HCBS have to do with inclusive postsecondary education?

I often get asked why policy is important and why the work of the U.S. Congress and the state legislatures matter to students in inclusive postsecondary programs. “It is all politics,” they say. “It is confusing” (yes) or” it is messy” (yes) or “I don’t understand it” (maybe...but you can). They say, “it doesn’t directly affect anything that affects me and my life, my students, my programs” (no!). “I can’t influence it anyway” (no!).

Let me give you a current example of why your knowledge and experience is so important to share with your policymakers.

Home and Community-Based Services, or HCBS, are the services available to people with disabilities and seniors on Medicaid to support them and help them to stay in their homes and communities, rather than be placed in institutions or nursing homes. This can also be referred to as Medicaid waiver services because states can get permission not to follow certain Medicaid rules, or waive them, and provide HCBS to individuals with disabilities who would otherwise require institutionalization. That way people can stay in the community.

Anyone watching the news in the last few months has likely heard reference to a piece of legislation in Washington that everyone is fighting over that could provide lots of money for everything from childcare to community college to senior care. (When you hear senior care, they mean HCBS!) Different versions of the Build Back Better bill have included A LOT of new money (over $150 billion) for HCBS for seniors and people with disabilities. That money could go a long way to clearing state waiting lists of people with disabilities waiting for Medicaid waiver services. The disability community has been working hard to educate Members of Congress on the experiences of people with disabilities, so they know how important HCBS are.

Why am I raising that here? Why should students or staff of inclusive postsecondary programs care about HCBS (except in a general way that we care about any money to support services available to people with disabilities)? Because HCBS can and is being used to support students in postsecondary programs. These funds have been used in states to pay for peer support, career services, employment supports, transportation, tuition, fees, technology, and more. (See these two publications about how Medicaid Waivers can be used to support postsecondary education costs: Use of Medicaid Waivers to Support Students with ID in College and Positive Outcomes for Students with ID Attending College.)

HCBS funding can also be used for self-directed services where individuals with disabilities choose where to spend their Medicaid dollars and direct those services themselves. These services support access to higher education for students who might otherwise not be able to attend postsecondary education. Each state is different in how they use their HCBS dollars and what services are supported, but think of what it would mean to have a lot of new money coming into your state to support HCBS services? What would it mean for all the people on Medicaid in your state? What would it mean for students in PSE programs?

Most people don’t know what HCBS services are, and they certainly don’t know that these Medicaid waiver dollars can be used to support services in YOUR programs. So, this is where your part comes in. Can you influence this? Yes! Can you educate your Members of Congress on the importance of people with disabilities being able to work, live, go to school, and be a part of their communities? Yes! That is what HCBS does! Can you and your students share your stories of college, employment, living and working and participating in the (college) community? Can you talk about inclusion and help policymakers understand why this is important to people with disabilities? Yes! That is what you do. Share what you know. Talk about the great student outcomes that PSE programs achieve: increased employment, greater participation in the community, relationships with peers, independent living, self-determination and independence. These are the same outcomes that traditional HCBS services support. 

And while you are educating your Members of Congress about the importance of HCBS services, share that same information with your state legislators (they are the ones who decide what services are offered in your Medicaid HCBS waivers in your state) and your Medicaid agency (they decide whether and which HCBS supports to offer in you state). If new money shows up, they need to know that you also provide HCBS services, support community living, and get great outcomes for students.

Can you influence policy? Yes! Yes! Yes! Share what you know. They need to understand.

About the blog author: Denise Rozell is director of Policy Innovation at AUCD. Denise works primarily on issues affecting youth in post-secondary education, employment and independent living and was the co-director for the PROMISE Technical Assistance Center (Promoting Readiness of Minors in Supplemental Security Income). 


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