Jackson Dopp is nearly 21, a strapping young man who’s 6-foot-1 and weighs nearly 200 pounds. When he becomes agitated and runs down the street screaming, which happens often, one could easily misread the situation.

His parents Jennie and Ryan Dopp, of Layton, Utah, have spent a lot of time telling neighbors, teachers, classmates, even the police, Jackson’s story before they meet him. 

Jackson was born with a rare chromosome duplication, is on the autism spectrum and has attention deficit hyperactivity disorder, oppositional defiance disorder and anxiety. He’s always had trouble controlling his emotions and behaviors. 

Although his parents and siblings love him dearly and his outbursts are less frequent now, his disabilities have left bruises: The Dopps have spent years feeling like they’re walking on eggshells, and Jennie Dopp says his siblings have post-traumatic stress.

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With the exception of supports through the individualized education plan schools provide each student with a significant disability, the Dopps cope mostly on their own. Schools don’t address long-term needs like housing, transportation and medical care, which his family arranges. And children with disabilities may become independent only to a degree, if at all, so their families can face lifelong challenges. Jackson has limited ability to care for himself. Social skill and behavior therapy that might have helped when he was younger was hard to obtain then and insurance didn’t cover it. So the Dopps largely built their “own army of support” around him, his mom said, and feel fortunate they’ve had personal resources many families that include a person with a significant disability lack.

America has no comprehensive family support system, according to The Arc, an advocacy organization for people with intellectual and developmental disabilities. Most publicly funded support comes through Medicaid’s home and community-based service waivers. Some states add limited general fund dollars — a trickle of help in a desert of need, experts agree.

Jackson has been on a waiting list through one of Utah’s Medicaid waivers for home and community-based services since 2014 to address needs not related to his education. He is now No. 2,302 in line. States have different waivers and waiting lists. Nationally, 850,000 people with significant disabilities are waiting for community-based help without which they might be institutionalized.

Some of them may get that help, though parents who’ve waited sometimes a decade or more said they’re trying not to expect too much. President Joe Biden has included in his budget proposal $400 billion spread over multiple years to end waiting lists for community-based services.

Meanwhile, separately, a draft bill by U.S. Rep. Debbie Dingell, D-Mich., along with Sens. Maggie Hassan, D-N.H., Bob Casey, D-Pa., and Sherrod Brown, D-Ohio, would make at least some home and community-based services part of mainstream Medicaid, guaranteeing access for families who qualify.

Disabilityscoop.com, which covers disability news, said those measures could eliminate waiting lists and even let people with disabilities move from state to state without having to start over to join waiting lists for services.

“Jackson is just one boy,” his mother said. “There are thousands of other children just like him or with more significant challenges.”

She said being doomed to sit on a waiting list for years — even decades — harms individuals, their families and their communities.

What’s a home and community-based waiver?

The Medicaid waiver system was designed to provide services for people in dire need who might not otherwise qualify for Medicaid. The National Disability Navigator Resource Collaborative said waivers offer medically necessary services and supports so people who have chronic conditions serious enough to require an “institutional level of care,” can instead choose to live at home or in community settings and get appropriate help.

The Hill calls Medicaid “biased” toward institutional care, which must be provided if someone with disabilities qualifies. Individuals and families that choose to live in the community are often left out.

People served by waivers include children and adults with a range of challenges, from intellectual and developmental disabilities to severe physical disabilities, substance use disorders, age-related disabilities and mental health issues, among others, said Kaiser Family Foundation.

The waivers are a patchwork: Medicaidwaiver.org notes 44 states have home and community-based waivers for people with developmental disabilities, but states have different definitions and rules. Some offer a combined waiver for developmental disabilities, which arise in childhood, and intellectual disabilities that occur in adulthood. There are other waivers, too. Utah, for example, has a physical disabilities waiver for those without use of at least two limbs, one for acquired brain injuries, another for children who are medically complex, a waiver for people who need technology to breathe, and more.

Waiver eligibility requirements can differ from general Medicaid eligibility. 

There’s a lot at stake. “At some point, 70% of older adults will require help with dressing, hygiene, moving around, managing finances, taking medications, cooking, housekeeping and other daily needs,” said Disability Scoop, which notes by 2030, all 74 million baby boomers will be officially old. But people of all ages may have conditions that require significant assistance.

Texas has more than 200,000 people waiting. Some states have no wait. Within states, some waiting lists are longer than others, depending on the waiver category. Aging out of a child-targeted waiver can create a gap before adult services are available. Moving out of state can make a family start fresh on trying to access services — with new waiting lists and rules specific to a new location.

Some state lists are first come, first served; others prioritize on condition and need. The government list Jackson is on prioritizes need, so his position changes due to others’ needs, though “you get points for being listed for years,” said Joey Hanna, executive director of the Utah Parent Center, an advocacy organization.

Services are funded through a state-federal match, feds paying the lion share. If states don’t contribute, neither does the federal government. Utah hasn’t funded extra waiting list slots for a couple of years.

Some states are toying with trying a waiver that puts a cost cap on support. That wouldn’t meet all the needs, but might help more families, said Hanna.

Right now, families who reach the front of the waiver line to get services can access lots of help, so the difference between getting a waiver and being next in line is night and day in terms of support. And being on a waiting list doesn’t provide Medicaid coverage, but waiver placement does. “For those who don’t otherwise qualify for Medicaid or get a waiver, meeting needs can be “wildly expensive,” Hanna said. 

The Dopps accidentally learned about the waivers. So far, knowledge has not been power. They dread the day in 2022 when Jackson’s no longer in school and the limited supports available there go away, too. Jennie Dopp said they fought to keep him in school until then; at one point his school tried to graduate him by giving him history credits for community outings, though he cannot safely cross a street alone. Budgets to provide services are finite and young adults with disabilities move on by age 22 if they haven’t graduated before.

What Congress could do

While campaigning for president, Biden proposed eliminating waiting lists and boosting the direct-care workforce. He included it in his infrastructure plan, saying “more people should have the opportunity to receive care at home, in a supportive community or from a loved one.” He vowed to boost service access and fund innovations in care.

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The Republican counterproposal to his infrastructure plan didn’t include home and community-based services. But Biden included the $400 billion in his budget proposal, sent to Congress in May.

Advocates for people with disabilities say funding would benefit a larger group. Roughly 53 million people provide most of the care for frail elderly or disabled relatives, saving society lots of money. Financial services firm Genworth said assisted living center charges average $51,600 a year nationally, while a semiprivate nursing home room averages $93,075.

AARP, a national advocacy organization for seniors, said family caregivers average 24 hours a week providing unpaid care and spend about $7,000 out of pocket annually. Some must leave the workforce to provide care.

The National Health Law program, The Arc of the United States, the Autistic Self Advocacy Network, the Center for Public Representation and the Epilepsy Foundation hailed the bill that would make home and community-based services a mandatory piece of Medicaid. They said it would build on earlier efforts to ensure no individuals with disabilities or older adults are “forced to live segregated from their communities.”

They said ending institutional bias saves money. The average cost to serve a person with a disability in a publicly funded institution in those states that still have them is $294,300 per year compared to the average cost of services under a Medicaid home and community-based waiver, $49,854.

Expanding access would reduce waiting lists and improve services to those already benefitting, as well as address fissures in delivery of long-term care that were revealed by the pandemic, Nicole T. Jorwic, senior director of public policy at The Arc, told Deseret News. She said the funding could build a bridge for passage of the bill making home and community-based services mandatory in Medicaid, ending waiting lists entirely.

“All of these investments will mean more people with disabilities can receive services in their homes in communities, which is what they and their families want,” Jorwic said. 

Families’ joys and sorrows

Matt McGhie’s 15-year-old son Charlie has multiple challenges, too: He is on the autism spectrum and also has near-daily seizures. McGhie and his wife take turns sleeping near Charlie so they can help him breathe when he has a seizure — sometimes 10 times a night. After a seizure, he may wander in a trance briefly until they can guide him back to bed.

His usually sunny, sociable personality can morph into aggression and angry outbursts — sometimes directed physically at his siblings and parents. “When he’s angry,” McGhie wrote on social media “the kids have learned to run and hide.”

Never have the McGhies, of Lehi, had access to services they didn’t pay for themselves or with help from relatives. They fought when he was little to get their insurance to cover autism. By the time the insurance agreed to cover services for children through age 7, Charlie was 8.

Charlie is No. 2,177 on a needs-based waiting list for services through Utah’s Division of Services for People with Disabilities. “That means there are 2,176 families ahead of us with needs greater than our own. They’re dealing with worse stuff than what I listed above, which is nearly breaking our family,” McGhie said. “That is rough.”

Several parents said they know families who couldn’t get services and eventually turned to institutional care when needs grew too big for them, including elderly parents who became too frail to physically manage. Hanna told of one mom in her 90s who showed up at the Utah Parent Center desperate for help with her 70-something daughter. The elderly woman was still caring for and lifting her.

Families hit different crisis points, including when a child with disabilities ages out of school and loses supports available there. Some parents quit jobs to provide supervision and care.

Hanna said advocates are pushing for people with disabilities to be able to work themselves, but that also requires support that may not be available.

Hanna’s family isn’t on a waiting list, able so far to manage care for their son, who is 15 and has disabilities. But summer will be hard: He’s too old for summer camp and they don’t know how they’ll work and juggle caring for him. He can’t be left alone long. She also knows many families have greater struggles.

“When families sit on waiting list with no services for years and years,” she said, “needs just get greater and greater. If you’re just kind of white-knuckling it and sitting on the waitlist, you’re not really able to build any capacity to plan.”

This attitude is common from strangers, said Hanna: “‘We’re sorry this happened and that your child was born with a disability, but it’s your responsibility to deal with it.’” As strong as families of those with disabilities are — “and there are no stronger people on this planet in my opinion,” she said — sometimes it’s too much, however willing parents are. And when parents die, the task passes to siblings — if there are any — conscripted sometimes willingly, sometimes not.

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In the future, her son may need a waiver’s services. “Now that he’s a little bit older, I think we’re realizing that he has more challenges than we thought. We’ll work on getting him on the waiting list, but it’s not dire yet.”

Jackson, too, is better off than many with disabilities. The Dopps found him a job three days a week; some parents have children who could never work. He will not earn enough to support himself. While others his age date, marry and navigate adulthood, Jennie Dopp said those steps — while a possibility for Jackson — would look different and be difficult to attain.

The Dopps believe he’d thrive with a roommate or two and some supports. Without help, he’ll never reach his potential. Because he deeply absorbs the emotions of everyone around him, his mom doesn’t think he’d do well in a group home.

And like all parents with a child with life-limiting disabilities, they’re pondering what will happen if they grow frail or die. They’d feel better knowing Jackson had access to the services and supports he needs.

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