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Advocacy group tells feds Missouri’s proposed disability changes could violate law


Advocacy group tells feds Missouri’s proposed disability changes could violate law

Sep 29, 2023 | 8:00 am ET
By Clara Bates
Advocacy group tells feds Missouri’s proposed disability changes could violate law
Missouri's Department of Mental Health building in Jefferson City (Annelise Hanshaw/Missouri Independent).

The federally-funded organization responsible for protecting the rights of people with disabilities in Missouri believes a proposed change in how the state pays for at-home care could violate the law. 

Missouri Protection and Advocacy Services, which was established in 1977, said in a letter to the Centers for Medicare and Medicaid Services that it is “investigating the proposed changes and believes they may be in violation of federal law protecting people with disabilities against discrimination.”

The letter, sent last week by one of organization’s attorneys, Will Hack, argues the proposed changes are “harmful to Missourians.”

The proposed changes at issue involve the self-directed supports service within the Department of Mental Health, part of a Medicaid-funded program available to Missourians with developmental disabilities to directly hire their own care staff.

There are currently 3,031 Missourians relying on self-directed supports to fund their at-home caregivers. Without it, they would require inpatient care.

The state moved this summer to change the way if funds self-directed supports, to delink it from the rate it pays home health agencies and paying self-directed supports families based on last year’s lower rate instead of this year’s. The state will initiate a rate study this fall to determine future funding levels.

Families who use the program have decried the proposed changes as lacking transparency and potentially threatening their ability to provide competitive wages to their caretaking staff. 

Advocates also question why a rate study didn’t precede the decision to change the rates — and say it’s not a given that they should get less money than their agency equivalents.

The changes need approval from the Centers for Medicare and Medicaid Services, where they are now awaiting action. The state expects to receive a response sometime this fall.

The state proposed to amend the rate to last year’s level in July. Hack’s letter frames those proposed changes as “hidden” and “buried on page 301” of the document.

With the new wording freezing the rates at last year’s level, the rate can’t “increase to meet the needs of Missourians,” he wrote in his letter to the federal Medicaid agency.

“This will effectively discourage people with disabilities from directing their own services, and push them towards provider-based services,” Hack wrote.

On Aug. 4, the Missouri Department of Mental Health filed public notice of its intent to change state regulations to remove the requirement that self-directed supports rates be comparable to provider rates.

“These changes are a coordinated effort to turn people with disabilities away from (self-directed supports),” Hack wrote. 

Self-directed services are part of a national trend over the last few decades away from institutionalization and toward community-based support and integration — based on the belief that decisions about an individual’s care are best made by those closest to them. 

Missouri advocates decry proposed change to at-home disability care funding

Someone called a designated representative, often a family member, is in charge of overseeing staff.

The premise of self-directed supports “is that when individuals have control of their resources their quality of life will improve and the overall cost of services will decrease,” according to the state’s manual on developmental disabilities

The Department of Mental Health says self-directed supports is the only part of the home and community based services with a rate not based on a rate study.

A rate study ensures alignment of rate methodologies and rate standardization, thereby preventing a situation of preferential treatment with regard to funding for any specific service type or model,” said Debra Walker, spokeswoman for the department of mental health. 

She added that the division “will continue to work with…stakeholders through the rate study process,” and the process will include “opportunities for feedback, submission of cost components, and review of rate assumptions.”