Lynda Petros and her husband provide round-the-clock care for their 23-year-old granddaughter, who has a rare genetic condition that causes a variety of physical and intellectual disabilities.
“She cannot cut her nails,” Petros told a judge last week in U.S. District Court in Albuquerque. “She cannot cook. She can’t be left alone. She doesn’t have the capability to make decisions for herself.”
Her granddaughter, Amber Jimenez, is one of about 4,100 New Mexico adults enrolled in the state’s Medicaid developmentally disabled waiver program, commonly called the DD waiver.
The Santa Fe family is among eight New Mexico families who filed a federal lawsuit in January asking a judge to block the state from using a two-year-old system to assess the needs of DD waiver clients.
Attorneys for the families asked U.S. District Judge Judith Herrera to halt the system they say deprives hundreds of severely disabled people of the round-the-clock services they need to live safely in their communities, rather than in institutions.
The state responded that New Mexico’s Medicaid program for the developmentally disabled needed to change because it had grown into one of the nation’s most costly per client and has a waiting list that has grown to about 6,200, requiring people to wait up to 10 years to enroll.
Attorneys for the state Department of Health, which oversees the program, also say the evaluation, called the Supports Intensity Scale, or SIS, is a proven needs-assessment tool and puts no DD waiver clients in immediate risk of harm.
The three-day hearing ended Wednesday, with Herrera to rule later. The DD waiver program cost $286 million in fiscal year 2014, funded 70 percent by the federal government and 30 percent, or about $86 million, by the state.
The program is called a “waiver” because Medicaid waives the requirement that a person must be in an institution to be eligible for Medicaid funding.
The program cost $71,561 per person last year, down from $73,903 in 2011. The national average in 2011 was $57,740 per person, according to a state report issued this year.
Jennifer Davis Hall, an attorney for the state agencies named in the lawsuit, told Herrera the program has high costs because many DD waiver clients “were placed in residential settings, either group home-type settings or 24/7 residential services that could be provided in a person’s home.”
In the case of the Petros family, two SIS assessments in 2012 and 2013 both found that Amber should “receive intermittent rather than 24/7 paid supports,” resulting in the elimination of Amber’s speech therapy and a two-thirds reduction in the $2,100-a-month stipend paid to her grandparents.
The SIS assessment is used to place DD waiver clients into one of seven groups that determines the base budget and services available to the person.
It replaced a system in which a team composed of the client’s caregivers and service providers drew up a budget and service plan, subject to state approval.
Earlier this month, Amber qualified for a different Medicaid waiver program, called Mi Via waiver, which restored both her speech therapy and her grandparents’ stipend, Petros said.
Mi Via is a “self-directed” Medicaid waiver program that some DD waiver clients are choosing as an alternative. Mi Via gives a client or guardian more choice about how funds are used, but it provides less money than the DD waiver and places more management responsibilities on the client, attorneys said.
Attorneys for the families said the SIS evaluations too often underestimate the person’s real needs and disabilities, resulting in a loss of stipends for at-home caregivers and therapeutic services for the client.
“This new process has replaced the historical process of teams of professionals and persons who know the individual intimately,” attorney Maureen Sanders said in opening statements. “Now those needs are determined solely by the SIS.”