Five years ago, when Colorado’s economy was looking far sunnier than predicted, state leaders tackled a problem that for years had troubled those who care for the most vulnerable among us.
State budget writers said there was money, finally, to begin clearing the waitlist for 24-hour care for adults with developmental disabilities, which in 2020 was about eight years long with about 2,800 names. Aging parents who had worried they would die before their adult children had someone to take care of them were relieved to the point of tears.
But now here we are: As Colorado grapples with a state budget forecast so grim that budget writers are trying to trim about $1.5 billion in spending, the prospects for care are headed in the other direction.
The waitlist for what’s called the development disabilities Medicaid waiver — now about seven years long and still with 2,800 names — could quickly double with the latest policy changes.
The people on the waiver, funded with state and federal money, have access to round-the-clock care in their homes, in host homes with a couple of other people, or in group homes with up to eight people. The cost of the residential waiver programs for adults and children pushed over $1 billion this fiscal year, with enrollment climbing to 9,451 people, up 843 people over the previous year, and compared with about 6,700 people in 2020.
Officials at the Colorado Department of Health Care Policy and Financing, which includes the Medicaid program, say the state can no longer afford that spending trajectory. In addition to other Medicaid cuts that will decrease the amount of in-home care and other services for families of people with disabilities, the department is proposing these changes:
- Instead of enrolling a new person in the adult development disabilities waiver each time one person exits or dies, Colorado will now enroll one person for every two who exit. Reducing the “churn” rate by 50% could mean a doubling of the waitlist to 14 years. It would mean a reduction of $6.5 million, including $3.2 million in state funds, according to legislative budget documents. By year two, the reduction will become $18.7 million, including $9.4 million in state funds.
- Adults who are on the developmental disabilities waiver will have to contribute financially for their residential services, depending on their income. This will reduce government spending by $12.6 million, including $6.3 million in state money, the first year, and a total of $26.3 million the second year.
- Children with developmental disabilities who live with their parents and receive daily support through Medicaid will no longer automatically get a spot in the adult program when they turn 18. The state Medicaid program predicts that about 30 children per month, or 363 per year, will no longer be automatically enrolled. They can receive other, less costly services instead, but not the adult waiver that provides 24/7 supervision. The change, slated for July 1, will save $15.3 million the first year and $43.7 million in the second year, according to budget documents.
Children with developmental disabilities who are aging out of residential care in the foster care system will still get automatic enrollment in the adult program, as required by law.
Slowing the growth in spending
Medicaid officials said adults who do not get a spot in the developmental disabilities waiver can still receive services through other, less comprehensive programs, shifting some costs from the waiver program to other areas of Medicaid. They estimated that about 80% of people who don’t get a spot will still receive help with personal care, cooking and cleaning, and other skill-building activities.
Shifting people to the other less costly programs “slows the growth in overall spending,” according to an analysis presented to the legislature’s Joint Budget Committee, a six-member group of lawmakers that writes the state budget.
Going forward, the only children with immediate access to the adult 24/7 program are those “experiencing emergencies,” exiting institutions or leaving the child welfare system, officials said. Everyone else will join the ever-growing waitlist, with their place in line determined by the date they got on the list and their specific needs.
“We want to be clear that these proposals do not take services away from anyone currently enrolled,” said Bonnie Silva, director of the health care department’s Office of Community Living. “What they do is slow the rate of future enrollment growth so the program remains financially sustainable, while continuing to prioritize access for individuals with the most urgent needs. Our priority is to maintain this very high level of care for those who need it most.”
The budget analysis noted that the end of the automatic transfer from the children’s program to the adult program has caused “considerable concern” for families who had planned on it.
One mother, Cindy Stevens, told The Colorado Sun she has pretty much given up on hoping a state Medicaid program with access to 24/7 care will happen for her son, who has cerebral palsy from a birth injury.
Stevens is 67, her husband is 68, and their son, Evan, is 35. Back when Evan turned 18, there was no automatic transfer from the children’s program to the adult program, and he didn’t get on the waitlist until he was 27.
The family in Parker has already waited eight years for a spot.
The adult waiver is a “golden ticket,” Stevens said, that “gives parents a way to support their children without them living with you.”
Stevens’ son, who has issues with short-term memory, executive processing delays and some physical disabilities, lived with his parents for 33 years, until the family moved him into his own apartment with the help of a housing voucher that took Stevens nine years to secure. He receives daily services through a different Medicaid program, including help with cooking and personal care. He has two part-time jobs, at an elementary school and as part of the Denver Nuggets Hype Squad, and is managing well on his own — although his mom comes by almost every day and his parents are the only people on call 24 hours per day.
If Stevens wants to take a vacation or spend a night in the mountains, she has to hire backup.
“What’s going to happen when I die?” Stevens asked. She wants to have a plan, for her peace of mind and for her son’s dignity, instead of the state responding only when it’s an emergency situation: “It’s like OK, I died, so you are going to have to put him in an institution or a host home.”
Now that she has secured the housing voucher that pays her son’s rent, Stevens hopes for a community living situation where her son could live on his own, with access to 24/7 support and meals provided. With all the upcoming Medicaid cuts and changes, she isn’t sure what will happen next.
“I don’t know what to fight for,” she said. “I’m going to fight for housing, I guess.”
Evan Stevens likes the idea of that living situation, too. “I know I can live my best life when I feel safe and supported,” he told The Sun via text. “I want to live on my own as independent as I can, but not lonely.”
The Medicaid system for people with disabilities has always been confusing for families, which is why he didn’t get on the waitlist sooner. Cindy Stevens is active with various boards and agencies for people with developmental disabilities and still doesn’t know all the rules. Many parents right now, she said, are unaware of the major changes about to hit.
“Most parents are in the dark,” she said. “They are too busy taking care of their kids.”
It’s unknown exactly how much the waitlist will increase as a result of the policy changes, but it could return to the 2014 length, when it took families an average of 15 years to receive the services.
In 2021, with an optimistic post-pandemic forecast, the state budgeted $15.5 million to move 667 people from the waitlist to services, in addition to those who received automatic enrollment. According to a presentation to lawmakers that year, it would have cost an estimated $315 million to eliminate the waitlist by 2026.
Since 2021, the state has funded the program enough to keep up with one-for-one churn, and last fiscal year, funded an additional 129 new enrollments.
This year’s cuts are the result of a state budget shortfall and not federal Medicaid cuts, which don’t take effect until future years.
The proposed changes are not official until the budget is approved by the legislature before its session ends in May. The Joint Budget Committee approved the reductions, but not without some angst.
Sen. Judy Amabile, a Democrat from Boulder, asked if the waitlist would jump to 14 years, though there was no definite answer.
“What is that going to look like,” she wondered, “for a family that is worried they are going to die before their kid gets a placement?”