When you have a child with a disability, you become more than just a parent. You become a caregiver. And many of us "parent-caregiver hybrids" have a lot to learn about supporting a child with a lifelong disability.
Medicaid waivers can be one of the hardest things to understand. Under broad federal guidelines, states can develop home and community based (HCBS) waivers to support people who want to live at home or in their community; "waiving" the option of living in an institution. These HCBS waivers are offered by nearly all states and Washington DC. The shift to community based living and person-centered care is an ongoing process. As is phasing out state-run institutions that are still operating in more than 30 states.
Waiver programs vary greatly when you cross state lines. You can find more information about each state on the federal medicaid website.
While Virginia offers multiple Medicaid waiver programs, the two most commonly used by people with intellectual and developmental disabilities are the Developmental Disability Waiver or the "DD Waiver" and the Commonwealth Coordinated Care Plus Waiver or the "CCC Plus Waiver."
Like institutions, waivers deserve a podcast of their own. The Virginia waiver system is complicated and subject to change. The My Life, My Community website has more information and helpful links. The Arc of Virginia has an in-depth and easy to understand breakdown of Virginia Medicaid waiver programs that is updated regularly. And the Center for Family Involvement has 1:1 informational and emotional support with staff that focuses on the nuances of Virginia waivers and can walk folks through what can feel like an endless maze. If you're not in Virginia, Parent to Parent USA can connect you with supports in your own state to help you understand the systems there.
Bottom line: waivers are a crucial component in accessing the supports needed to live independently. It's critical for parents to understand them; and if a waiver is needed, prioritize applying for one. That's because the waitlist is long. More than 14 thousand Virginians with disabilities are on it. Many of them have been on it for years. Which brings us to the heart of this episode: help and hope for people who are on that waitlist, and for their families.
The Individual and Family Support Program or IFSP provides funds for those on the Virginia waiver wait list. But you have to apply. That's why we brought on IFSP Support Coordination Supervisor Rhonda Gaines and Program Manager Heather Hines to explain more.
SHOW NOTES:
IFSP Call Center Monday-Friday 9:00am - 4:00pm: (844) 603-9248
For more IFSP Council Information email and to apply: ifspcommunity@dbhds.virginia.gov
Facebook Pages for IFSP Councils: https://
TRANSCRIPT:
01:00:07:17 - 01:00:34:18
Erin Croyle
Welcome to The Odyssey. Parenting, Caregiving, Disability. I'm Erin Croyle, the creator and host. The Odyssey podcast explores the turn our lives take when a loved one has a disability. My first child was born with Down's syndrome in 2010. Not only did I have to learn how to be a mom, I had to educate myself about how to support a child with a lifelong disa
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