The Virginia General Assembly proposed in its budget to provide funding for only 825 disability waivers on Sunday, but nonprofits and families plan to lobby for more.
There are 12,000 families in Virginia waiting for disability waivers, which is up from 11,000 that NBC12 reported in 2017.
There are several kinds of disability waivers one can receive, most that provide services and supports in the areas of community engagement, employment, day services, residential, crisis, medical, environmental modifications and more.
While there are 12,000 families in Virginia on the "waiver wait list," there are 3,000 who are in urgent need, including the Meacham family.
Marybeth and Charles Meacham have been advocating for waivers for 25 years, since their daughter Anne, who has Down syndrome, was 12-years-old. Twenty-five years later, Anne is 37 and the Meachams are 70, and nothing has changed.
Their daughter still doesn’t have the waiver she needs.
“It’s our silver anniversary,” Meacham said. “We've been standing in front of this body for 25 years. We started advocating at the General Assembly when Anne was in middle school and she was 12. She is 37 and nothing has changed."
Anne's Down syndrome has impacted her life in many ways.
"It affects development, it affects muscle tone, it affects intellectual and cognitive functioning," Marybeth Meacham said.
The Meachams are Anne’s caregivers. They help her get dressed, brush her teeth, bathe, do laundry and other household chores and take her to and from her job at Goodwill. With a Medicaid waiver, the Meachams would receive support from the state so Anne can live a more independent life.
NBC12 asked Anne how a Medicaid waiver would help her. She said, "To be more independent and to be on my own."
"We're at the point of needing more in the home so she can have a life in the community, but have services at home that help her and help us," Meacham said.
The ARC of Virginia is advocating for more waivers too.
"Until we focus on the system - the DD waiver system - and fund people who are in need we are never going to be able to change the system to be proactive," said Tonya Milling, the executive director for the ARC of Virginia. "We're always responding reactively when people are in crisis and it costs tremendously more to help a family in crisis."
"Our fear is that we will die and there will be nothing in place for Anne," Meacham said.
"Even though we've tried so hard to ensure her life will go on and not be in crisis."
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