VIRGINIA BEACH, Va. — Marisa Norman walked into a Virginia Beach library prepared to learn how it works. It’s one place she’s considering working at.
Marisa has special needs. Much of the care she receives comes from a state Medicaid program her family has been able to enroll in. Her family has been approved for the Family & Individual Support waiver.
“It’s not just medical care," Marissa's mother, Michelle, said. "There’s respite care, personalized care, behavioral supports, and also job opportunities support."
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But there’s a catch: the family only gets the care if they live in Virginia. Marisa and her mother live in Virginia Beach but her father is in the Navy and has been stationed out of state four times in the past nine years..
Leaving Virginia would mean leaving behind the care Marisa needs.
“All of our family is in Texas," Marisa's mother said. "I grew up in San Antonio, my husband grew up in Austin. That’s where we met in college. That’s where our support system is."
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Virginia Congresswoman Jen Kiggans is co-sponsoring a bill that would allow military families in Virginia receiving long-term care through a state Medicaid program to take the care with them if they move out of state.
“We frequently move our military members every two to three years, and their families," Kiggans explained. "So that length of time that they may have those gaps in services for their special needs child, we want to make sure we’re eliminating those gaps."
Marisa’s parents spent about 12 years on a waitlist to get care for Marisa. Marisa’s mother said given the number of people who are currently on the waitlist in Texas, she estimates the family could have to wait decades to get care there.
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“This is just, maybe, one small way to help these families out and thank them for their service that they do," Marisa's mother said.
“Similar to what we’re doing with same-sex spouse employment where we’re trying to make sure that there’s understandings and agreements between states so it’s kind of a seamless transition," said Kiggans. "Anything we can do to make the lives easier for our military families instead of harder, that’s the right thing to do."
Marisa’s mother runs a nonprofit called Partners in Promise which helps military families who have children living with special needs. She said the legislation would not only help families but would help the military as well.
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“We’re having problems keeping families within the military nowadays," Marisa's mother emphasized. "So I think this is just one more insurance to allow these families to continue to serve."
According to the 2023 annual report by Blue Star Families, military service is decreasingly recommended.
The report found in 2023, 32% of active-duty military family respondents were likely to recommend military service. That was down from 55% in 2016.
“We always want to support families," said National Association of Councils on Developmental Disabilities Executive Director Jill Jacobs.
The organization supports councils in each state and U.S. territory which provide things like education and information to families seeking care.
Jacobs's family, too, could benefit from the legislation going through Congress. She was able to get care through a state Medicaid program for her son.
“We never got to go back to our families, and we’re in Virginia today still," said Jacobs.
Aside from the care being important, it's also expensive. That means if a family leaves a care program, they may go without it until they're able to get into another program.
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“One person’s plan might be $15,000 a year of services... and as they progress, they become less," Jacobs explained. "Another person who needs support every day, there could be $100,000 a year."
Marisa’s mother said if the legislation doesn’t pass, the fight won’t be over.
“The families who have kids with disabilities, they’re fighters," she said. "They are passionate advocates. If this doesn’t go through this time around, I can guarantee you there’s going to be others paving the way to try to get some similar type of legislation through so that we can help our kiddos."
The legislation is endorsed by the Children’s Hospital of the King’s Daughter in Norfolk as well as two national organizations, including the Arc of the United States. In a news release, both organizations offered statements affirming their support.
“CHKD commends Congresswoman Kiggans for introducing the bipartisan legislation, The Care for Military Kids Act, alongside Rep. Marcy Kaptur. This crucial bill will ensure active-duty dependents with disabilities covered by Medicaid can access vital long-term services across state lines. Our military families deserve seamless access to healthcare services, especially for dependents with long-term health needs. Community-based and home care is essential for children facing chronic health challenges. CHKD supports this legislation to enhance care for our nation’s military families."
“The ability of individuals with disabilities to move across state lines for better opportunities for them and their families remains a serious challenge because of the lack of portability of Medicaid benefits. This is particularly true for members of our Armed Forces with disabled dependents. It is unconscionable that a child of a servicemember with disabilities could go without needed supports due a parent’s commitment to our country’s safety and security. We thank Representative Kiggans and Kaptur for introducing a much-needed fix to this issue.”
The National Disability Rights Network is also endorsing the legislation. In a statement, the organization calls the legislation important.
"The National Disability Rights Network (NDRN) supports Representative Kiggans’ and Kaptur’s legislation as our members the nationwide network of Protection and Advocacy (P&A) agencies have seen the immense difficulties by people with disabilities and their families to maintain health care and support services to be fully integrated into the community when they move from one state to another. We know that military families move frequently, so allowing them to maintain these critical health care and support services when moving from one state to another is important to maintaining a strong military."
