Federal Complaint: “Extreme Barriers” for Alabama Adults, Children with Disabilities in Accessing Care

The Alabama Disabilities Advocacy Program has filed a federal complaint against the Alabama Department of Senior Services, alleging that the agency imposes “extreme barriers” on disabled children and adults attempting to access Medicaid services.

Failure to deliver services can have serious consequences and urgent need for reform, claims ADAP; Two potential clients died while lawyers were preparing the lawsuit.

The Elderly and Disabled Waiver, administered by ADSS and the Alabama Medicaid Agency, helps families access long-term care in their communities that was previously only available in institutional settings. The waiver can pay for home medical equipment, such as ventilators and feeding tubes, and for nurses and healthcare providers to oversee treatments.

According to ADAP, however, the Department of Senior Services has not properly managed waivers for the past three years because “standard procedures for the administration of their waiver programs have not been developed and maintained at the highest level of ADSS.”

The advocacy group representing 13 families in their complaint with the U.S. Department of Health and Human Services says the Alabama agency denied services to clients without due process and misrepresented what services are available to families and what services they are entitled to have failed to to keep enough healthcare providers in their system so that family members have to oversee medical care, which can be so time-consuming that they are forced to stop working.

“We see that there is a very, very thin barrier between these people who need to be institutionalized because there is such a lack of support from the state agency responsible for maintaining these services,” said Shandra Monterastelli, senior Attorney at ADAP.

If that barrier were to be breached, there are few institutions in Alabama that could act as a safety net. While there are two adult care homes on ventilators in Alabama, the closest facility that could support children on ventilators is in Texas.

“Many of these children who are on ventilators would not only have to be removed from their homes and communities to be institutionalized if that were the case, but they would risk being relocated entirely to another state hundreds of miles away ‘ said Monterastelli.

“And the adults face some pretty serious threats to their health and safety if they have to be institutionalized. Not to mention the horror of being removed from their communities, their families and their homes.”

ADAP is asking Health and Human Services for a “major overhaul” of the Department of Senior Services’ operating procedures to address the issues and assist ADSS in developing methods to properly administer the exemption.

“All of these individuals are medically complex and have intense support needs. Her medical needs are undeniably significant and emerging… two potential complainants died in the course of preparing this complaint. It cannot be overemphasized the complainants’ urgent need for the services to which they are entitled and the state’s failure to meet the complainants’ needs cannot be overstated,” the complaint reads .

While ADSS said it cannot comment on specific complaints, Debra Davis, the agency’s deputy commissioner, said in an email to AL.com that the department “is happy to answer questions from clients seeking information about the services.” who receive or who have questions about how information should be filed in order to receive the benefits to which they are entitled.”

Although it’s unclear when HHS will process the complaint, federal officials have made it clear to ADAP that it is a “priority issue” for them, advocates told AL.com.

Savannah Tryens-Fernandes is a member of the Alabama Education Lab team at AL.com. It covers the health and well-being of children. It is supported by a partnership with Report for America. Help support the team here.