Families, care providers of disabled individuals devastated by pending Medicaid rate decrease, calling for action

COEUR d'ALENE — In a cozy house tucked into a quiet Coeur d'Alene neighborhood, three young men enjoy living fairly independent lives.

They watch movies, visit with family members, go on trips to the mall or to the grocery store. They work with service care providers to build life skills, such as taking care of personal hygiene, house chores and prepping their own meals.

Cody Gray, 23, is one of these young men. His autism does not allow him to live completely on his own, as his communication and social skills are limited. He requires what is known as "high support," or constant supervision and assistance with daily tasks, while sharing space, objects and caretakers with other disabled individuals. Staff members from the nonprofit Milestone Decisions, Inc., are with Cody and his housemates — who have similar disabilities — around the clock to provide supported living services and ensure they are safe as well as engaged and happy.

"We like to go on van rides and look at trucks," said Zina Mack, who has worked with Cody for almost two years. "We’ll go to Les Schwab and fill up tires because he likes big tires."

Cody volunteers and swims at the Kroc Center. Milestone staffers sometimes take him and his housemates to the library or to a bakery for hot chocolate.

"He is a social guy and he loves to be out, loves to see people," said Cody's mom, Kathy Gray.

Cody's parents actually purchased his house with other parents of a disabled youth in 2012. The other parents and their son have since moved on, but this house is Cody's forever home, where he will spend the rest of his life and where he will be safe with staff members if anything ever happens to his parents.

Most Wednesdays, Cody and his housemates enjoy pizza night, a special social hour when their friend, Zach Lesley, 20, comes to visit and have "dude" time. Zach is autistic as well as bipolar and epileptic and requires one-on-one "intense support," which is more hands-on and direct than the high support.

"They get each other," said Zach's mom, Vickie Lesley. "You want them happy. You want them to have a place to hang. They’re no different than other guys. They get each other.”

Zach also lives in a supported living group home with other young men with disabilities who receive care from Milestone staff. His parents moved him into his home in May. It's what he calls his "big man" house.

"Zach learned to mow the lawn this year," Vickie said. "His neighbors have this huge flower garden, and Zach had never mowed the lawn. I was like, 'Yeah, you can let him.' Then I came over and the lawn’s mowed, flowers still standing, yes!”

"That’s Milestone working with these clients," said Zach's stepdad, Jim Stevens. "There is no way I would have taken Zach out and mowed a lawn with him. I would have been scared to death."

These young men are leading the fullest lives possible with the support of loving families and dedicated staff members who help facilitate their freedoms.

Without those staff members, these young men would not get to participate in their community. They would be homebound or possibly institutionalized.

That's what their family members and care providers are afraid of.

A surprising announcement

On Dec. 18, the Idaho Department of Health and Welfare issued a letter informing supported living and residential habilitation provider agencies that Medicaid provider reimbursement rates would be significantly decreased and revert to 2012 rates as of Jan. 1. This is because of a 2015 Supreme Court decision that overturned a 2012 Idaho lawsuit — Inclusion Inc, et al v. Armstrong et al — that had increased reimbursement rates for these services. IDHW then issued another letter Dec. 22 to inform providers they would have an extension until Feb. 1 because IDHW "realized more time would be necessary for many of them," according to IDHW's blog.

But whether the extension was two weeks or two months, this announcement came as quite the blow to agencies and families alike.

"The funny thing about this ruling, it wasn’t out in the open," Vickie said. "It wasn’t flung out there that we were waiting for a decision. They snuck this through … it snuck under the radar on the holidays."

Financial consequences

This announcement means Medicaid provider reimbursement rates will be cut 9-12 percent for those receiving high support, like Cody, hourly supports will be decreased by about 36 percent and those who receive intense support, like Zach, will be losing 46 percent of their funding. According to information in the overturned lawsuit, more than 6,200 individuals in Idaho receive supported living services.

"We’ve had to make cuts already that affect peoples' lives," said Kelly Head, executive director of operations with the nonprofit Westcare Management, Inc., which oversees operations and finances with Milestone's board.

"People will lose their jobs."

Head explained the supported living program is 100 percent Medicaid reimbursed and presently families don't have to pay for much as Social Security and Supplemental Security Incomes pay for food, housing and some spending money.

"Milestone families are very generous and some have helped by purchasing their family member homes and vehicles for home use," she said. "However, there would be very few families who could afford to pay even the low rate of $225 per day for high supports on their own. Private insurance does not cover these long-term care placements, so that wouldn’t be an option either."

"Cody’s (rate) is going to be a $23-a-day difference, that’s the least amount," Kathy said. "Even for that, that's $8,300 a year that Cody’s losing for his budget. You add that to the other guys in this house, this house alone is going to lose $25,000 a year."

Head said alternative care, such as state hospitals or intermediate care facilities, are even more expensive while stripping disabled individuals of their independence and quality of life. She called this move back to the 2012 rates "disgusting, it's terrible. It’s the worst thing I’ve seen happen in this field in the 20 years that I’ve been in it here in Idaho."

"They’ve devastated those rates," she said. "The average wage — and not the starting wage, sadly, I wish we could say $10 an hour was our starting wage, but it’s not, it’s our average wage — and you put a benefit load on that, it’s about $12.50 per hour per employee, times that by 24 — that’s the need of some of these folks, that’s $300. You get reimbursed $260, they don’t even cover the basic staff cost, let alone the program coordination that’s required or the oversight that’s required. It is ridiculous … we will run through our reserves by the end of spring. We’ll be running into the red. There is no extra money."

Looming legalities

Before this announcement could even get cold, eight service care providers and two patients filed a lawsuit against the State of Idaho to delay the cut to the Medicaid reimbursement rates. According to the Idaho Falls Post Register, the lawsuit says IDHW did not complete the proper rule-making procedure before announcing it would revert to the previous rates.

"There's no legislative or public review of this (decision) at all," Boise attorney James Piotrowski, who is representing the providers and patients, told the Register.

However, Niki Forbing-Orr, public information officer for the IDHW, said this is a long-standing issue; the Supreme Court made its ruling in April and the Department had been waiting for the rate change approval from the centers of Medicare and Medicaid. She said the letter was sent out as soon as the Department received that approval, once the lawsuit made its way through the courts, and that it was a surprise to them that so many providers were unaware the announcement was coming.

"We had thought we communicated the intention," she said.

Forbing-Orr said the decision to revert to 2012 rates is "because the rates had been increased so much over the last three years."

"We needed a starting point," she said. "The State has the right to set the rates at what it sees fit, is basically where it boils down."

She said IDHW had not heard much outcry from agencies or participants about the pending ruling and that as far as she knew, people had not had any trouble finding replacements for Medicaid providers.

"Our No. 1 concern is making sure the participants have access to the care they need at the quality we expect them to," Forbing-Orr said. "We have not hit any roadblocks at this point."

Social setbacks

While these rate reductions might not appear devastating to some, to parents like Kathy and Vickie, and to Milestone staffers and others who work in the residential habilitation/supported living field, they are heartbreaking. Kathy and Cody's dad, Ed, work full time. They would have to figure out a way to find the 6-foot-5 Cody 24-hour care, which might mean losing their own work hours to care for him or struggle with paying daily fees for their disabled son by themselves.

Vickie and Jim just moved into a new house. They waited 10 years to get married until they could finally get Zach and his step-brother, who is also autistic and lives in Spokane, into homes where they could make lives for themselves. If the ruling goes through, Zach would have to move in with them in their smaller house and one of them would have to leave their job to spend 24-7 with their energetic, chatty and many times unpredictable son. The couple would have to give up their newfound independence, just as Zach would be giving up his.

Milestone associate director and Coeur d'Alene administrator Emily Crook said changing anything for these guys, even something as simple as a Wednesday pizza night, can cause them to take backward steps with their conditions. Routine is what helps them thrive; change is really hard on them.

"That’s going to cause a lot of regression in skills, not being able to progress to continue to be a contributing member of society,” she said.

And, she said, leaving them unsupervised or only partially supervised due to lack of staff can cause serious problems, for them and those around them.

"That opens the door to a lot more health and safety risks," Crook said. "If you have three intense individuals, usually they do need one-on-one because of high behaviors. Maybe they’re violent or aggressive; if you’re one person with three of those people, you’re opening the door for something terrible to happen, honestly, if there's not the safety and supports in place to make sure that they make it through the day without somebody getting hurt."

"They don’t understand danger," Kathy said. "Somebody has to be watching when they get out of a car. They have to watch these guys, they could walk out in front of a car."

Head said as well as physical danger, disabled individuals, without the proper care, many times end up in the hospital or jail.

"They’ll be arrested more, they’ll go to the emergency room more," she said. "Without the support they need, they’ll be looking at prison. These are individuals who have developmental disabilities, intellectual disabilities ... it’s terrible for them to have them in there."

What happens now?

Many provider agencies throughout the state are responding to this announcement by issuing notices to those they serve, cutting staff hours or even letting employees go. Provider agencies have opened a dialogue with the IDHW to request a delay in implementation to allow time for a rate study to be conducted.

"I can speak for Milestone, we need a rate study done," Head said. "I know the Department is concerned about all providers opening their books, and as far as Milestone is concerned, they’re yours, look. We believe that yes, the providers should open their books and this study should be done. And if you’re not going to open your books as a provider, then your provider number should be taken. That’s our position; in order for this program to continue, we need rates. In the meantime, instead of kicking us down to 2006 rates, leave us at our rates while we go through this rate study and if all the providers in the state agree to open their books, that would be great."

Forbing-Orr said it could take anywhere from six to nine months to complete a rate study, which would allow IDHW to investigate the rates and where they are in relation to program/agency cost needs and adjust them accordingly.

"It can take a lot of time to survey," she said, adding that IDHW will be closely monitoring participants' difficulties finding replacement care once the rate changes are in place.

"If that becomes an issue, then we would re-evaluate the rates."

Officials at Milestone and other agencies are urging people to contact Idaho Parents Unlimited, an organization that assists families of children with disabilities, and share their stories while rallying for the delay of implementation and rate study. For information or to contribute a story, call IPUL executive director Angela Lindig at 208-342-5884 Ext. 102 or email angela@ipulidaho.org.

"It is said that 'the measure of civilization is how it treats its weakest members,'" Vickie said. "With that said, we have failed Zach and so many others who can not speak for themselves. What kind of society do we live in here in Idaho? My son is not a dirty secret of society to be hidden away and ignored. We tried that method in our history, when society put these precious individuals into institutions. Have we learned nothing from our past?"