MISSOULA, Mont. — Robin MacMillan opens her safe and drags out some of her file boxes reflecting years of paperwork and records she’s kept regarding her son’s care.
MacMillan skims through files listing off what they are for, “guardianship papers, you have to go through guardianship, Montana Able, Medicaid documentations, paratransit.”
Her son, Robbie, has been on a Medicaid HCBS waiver waitlist for eight years.
He is now 19-years-old, but Robby’s not just another number on a waitlist.
Robbie is a person, a teen who loves heavy machinery and getting kisses from his service dog Marny. Robbie navigates each day with the help of his mother as his primary caretaker. He suffers from unpredictable epileptic seizures, cerebral palsy, Gorlin’s Syndrome and a rare chromosome deletion disorder which causes developmental delays.
MacMillan says Robbie is now over 6 feet tall and about weighs 180 pounds. She manages his seizures, but puts herself at great risk for injury when she is trying to keep him safe during an episode. Relief for her is few and far between as she also cares for her 92-year-old father.
During our interview, Robbie brings his tablet out to show video of him driving a giant tractor and digging up dirt, an experience he had while on a Make-A-Wish trip to Diggerland USA in New Jersey. He smiles proudly and cues his mom to help him explain the video, MacMillan smiles lovingly and shares Robbie's story about how most kids want to go to Disneyland, but all Robbie wanted was to drive construction vehicles and he did.
Robbie’s need for a Medicaid HCBS waiver is vital to the care he needs for the rest of his life.
“He was added to the list in August of 2015, and we’re still on the waitlist eight years later," MacMillan explains.
A Medicaid HCBS waiver is coverage for home and community based services for those with physical or intellectual disabilities, medically complex diseases and developmental challenges and there are two types of waivers with varying qualifications:
Enrollment is limited to approximately 2500 people for each waiver for the entire state of Montana.
What do these waivers do? They waive standard Medicaid income qualifications and provide a wide range of coverage for in-home care, medical devices and therapies that traditional health insurance does not cover.
The harsh reality of these waitlists is how spots come available.
“If families leave Montana, then the waitlist opens up, or if for some reason there is a death of a child, then your child can move up on the list," MacMillan tells us.
For those who are unable to wait for the waiver to come through, they must explore other options.
Jesse and Nicole Costello uprooted and moved to Idaho after waiting over two years on the Montana waiver waitlist. “We relocated solely for our two-year-old,” says Nicole.
Their daughter Jane was born with a medically complicated case of Down syndrome. They put her on the Montana Medicaid waiver waitlist when she was about six months old. At that time, their benefits case worker told them their chances of getting the waiver before Jane became an adult were slim to none.
Nicole tells us what the case worker told them after they mentioned the possibility of having to relocate.
“She said that happens pretty regularly, that people relocate because of this, we made it about two and a half years before there was no other option, we needed to relocate, we couldn’t sustain the way we were living and take care of Jane,” said Nicole.
Jane is now 4-years-old and with the benefits she has received on the Medicaid waiver in Idaho, she is making leaps and bounds with her development.
“This last year, everybody has said, wow, she’s changed so much, and she’s just taking off, she’s taking off,” says Nicole, with a smile on her face as she gazes down at Jane who sits on the couch between her parents.
Jesse adjusts Jane's feeding tube to make sure she is comfortable. Jane claps and smiles at her mom.
Both Jesse and Nicole share their sense of relief they experienced after receiving coverage and support for Jane from the Idaho Medicaid waiver.
“It’s no longer just keep her alive, now it’s let’s let her thrive, let’s let her grow," says Jesse.
The Costello's are grateful to be in a better situation.
They also understand everyone’s circumstances vary and hope to see Montana make some reasonable changes to the waiver program.
“People like us, among many, many other people are getting forced out. Taking options they don’t want to take. And who it’s really hurting is the kids, I mean, we would do anything for her, and that’s the way most parents are. They shouldn’t be forced to take lesser paying jobs or to get divorced or to move," says Jesse.
Back in Montana, Robin MacMillan waits in the state of limbo created by what she says is a broken system.
She explains that she's spent years taking lower paying jobs just to qualify for Medicaid to cover Robbie’s care.
Robin says, "Pretty much sacrificed my whole career, which I think is really common for a lot of families, sadly.”
Now that he's an adult he qualifies on his own for Medicaid, however, without additional in home care that the waiver would provide, Robin cannot go back to her full time career.
NBC Montana reached out to the Montana Department of Health and Human Services along with Gov. Gianforte's office.
Gianforte's press secretary replied to our email with, “I would refer your questions regarding Medicaid HCBS Waivers to the Department of Public Health and Human Services. They should be a good resource to provide specifics on the program.”
DPHHS Communications Director Jon Ebelt tells us that funding for the waiver program is a mix of state and federal dollars. Sixty-four percent from federal and 36% from the state, with about $136.6 million budgeted for the next fiscal year.
We also found the Kaiser Family Foundation reported 2,184 people on the waitlist as of 2021. We asked Ebelt in a separate email what the total number of people currently waitlisted is, but did not hear back before our deadline.
Ebelt tells us the list is inflated by automatic eligibility enrollment issues where people who do not require services do not bother to opt out. He says around 10 people are screened off the waitlist and onto the waiver every month.
He adds that over a thousand children on the waitlist under 8-years-old and are only temporarily or provisionally eligible. He also says those who receive the waiver can still face challenges finding providers and services due to ongoing staffing issues and that some people on the waitlist qualify for standard Montana Medicaid.
In the meantime, parents like MacMillan continue to hope and wait for the support they say is much needed. The burnout from caretaking can be overwhelming when there's little to no respite and for people like Robin, asking for help is not easy.
"It's constantly I'm in a state of, I need to give, give, give, and to stop and be vulnerable and say ok, I can't give anymore, I need help, that is huge for families to do," says MacMillan.
We will continue asking questions about this issue and let you know what we find out.