MORGANTOWN — Caregivers for people with intellectual and developmental disabilities point out flaws in the new state Medicaid budgeting system in recent filings in a federal class action lawsuit.
Program budget caps and other problems prevent their clients and family members from getting the care they need and prevent families from getting the support they need, they say in statements filed to support the case.
The program is the Department of Health and Human Resources’ Medicaid Title XIX Intellectual/Developmental Disability (IDD) Waiver program, operated by DHHR’s Bureau for Medical Services (BMS). It serves 4,684 people enrolled, with a waiting list of more than 1,200, according to DHHR.
The case is a class action suit filed in the U.S. District Court for the Southern district of West Virginia by Mountain State Justice — originally on behalf of five waiver clients and later broadened to take in the whole group — against the DHHR secretary, originally Karen Bowling, now Bill Crouch.
The filings from July and August are chiefly lawyerly wranglings over who should be granted summary judgment.
But included in last week’s papers are five declarations by caregivers and family members about flaws in the new care budget system created to replace the old secret, arbitrary algorithm determined by the court to violate due process.
Rebecca Curtis, IDD Waiver manager for the Jackson County Development Center, said she’s noticed several trends.
One, most individuals are receiving budgets lower than 2017. People living at home — rather than in Intensive Support Setting (ISS) sites — have seen the steepest reductions. Four clients have had to stop or reduce day habilitation services, which are services to allow the client to pursue skills and interests outside the home.
Three family caregivers speak to the problems of service caps — typically caps on the amount of hours for a particular service such as direct care or respite time. (Documents abbreviate the names for client privacy.)
For example, Bo M. requested $50,000 worth of services though he needs $73,000 worth, according to the state assessment and budget formula. He didn’t try to get more.
“Bo did not need more money than what was assigned to him,” the caregiver said. “Rather, Bo needed services that he was not permitted to access due to the arbitrary service caps that were implemented by DHHR in 2015.” Because the caps are absolute, Bo didn’t bother asking for more. “Bo was unable to use the full amount of his assigned budget and unable to meet his needs, due to the arbitrary service caps.”
Tracy G. has a family member, Alexa, on the waiver. Tracy gave up her job for a lower-paying one to care for Alexa. She would need 50-60 hours per week to be able to return to her old job, including commuting time. Respite care hours caps don’t allow that.
“The suggestion that I could move all my respite care to the week leaving me with only a little over an hour of respite each weekend day is not feasible.” That wouldn’t even get her to the grocery store.
“Alexa requires 24-hour care and receiving almost no respite on the weekends is very difficult on me and on my family and my emotional wellbeing.”
Mountain State Justice alleges discrimination
In addition to calling attention to reduced access to services in its IDD Waiver lawsuit, Mountain State Justice also alleges that the Department of Health and Human Resources discriminates against the majority of waiver recipients by allotting more money to those who live outside their homes.
In a recent filing, Mountain State said DHHR’s new budget matrix system allots smaller budgets to the 75 percent of waiver clients who live at home than to the 25 percent who live in intermediate care facilities, nursing homes and group homes.
“When budgets limit the ability to obtain services, smaller budgets necessarily limit access to all services, increasing community isolation and decreasing available options,” it said.
It cites the examples of two wavier clients who will be eligible for base budgets of $44,231 to stay at home. But without any changes in services or their medical conditions, they could receive $123,279 by moving to a group home.
A group home setting, it said, poses no additional care or financial burdens on the families. So, DHHR is “discriminating against community-based recipients by favoring institutionalized recipients with more or better services, programs or activities.”
DHHR counters in its recent filing, “The differences between the process for authorizing those [home-based] services and the process for authorizing services provided to individuals living in institutions is not ‘discrimination,’ but simply reflects the reality that these are different benefits that are alternatives to each other.”
It continues, “For members living with their families, waiver services are intended to supplement, not supplant, care from family members. Even so, for those waiver members and families who desire to do so, DHHR permits family members to be paid to provide care, and over 3,000 family members are paid to do so.”
In a July filing, DHHR’s Patricia Nisbet, director of the Office of Home and Community Based Services in the Bureau for Medical Services, made some statements about the waiver program’s annual budget shortfalls.
“The state legislature has not appropriated any additional money to the IDD Waiver program since 2013, and funding for the program has been frozen at $89 million per year.” But spending increased every year and was running about $65 million per year over budget.
The overspending and subsequent client waiver budget and service cuts have been documented and reported here many times.
However, Nisbet’s statement that the budget was “frozen” doesn’t jibe with testimony BMS has given to the Legislature. BMS officials admitted in at least one committee meeting that they never asked for more money despite the annual overruns.
Legislators asked why no one called attention to the problem and BMS officials said the figures were included in budget documents presented to the finance committees.
Legislators said later that putting numbers in documents isn’t the same as calling attention to the numbers and asking for help.
Asked about this discrepancy, Mark Drennan, executive director of the West Virginia Behavioral Healthcare Providers Association, told The Dominion Post in an email exchange, “It is up to the department to request an improvement package. To my knowledge they have not requested one. The Legislature could choose not to increase the line, but they did not ‘freeze’ it. If they need more funding they should request it with a detailed explanation.”
Nisbet notes in her filing that West Virginia spends more per person than all but two other states.
The Dominion Post asked DHHR why it never asked for more money during the time in question.
It said in an email, “The IDD Waiver program is reported on independently each month by DHHR’s Bureau for Medical Services to the Legislature and has been on the agenda for discussion in budget presentations for the last several years.
“The funding for the IDD Waiver program has continued to be at the same level since 2012. Structural changes to the program have resulted in additional wavier slots being added to the program within the allocated budget by the Legislature.
“DHHR is committed to caring for the most vulnerable citizens in the state and Medicaid’s ability to control cost growth in the IDD waiver will result in more West Virginians being served.”
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