Three school-age children with developmental disabilities who cannot talk are able to communicate using speech-generating devices, thanks to student lawyers at Wayne State University Law School.
The children are insured via Medicaid HMOs, and, in separate instances, doctors and speech therapists recommended all three get funding for the speech-generating devices to help them communicate and learn.
The machines cost thousands of dollars, and Michigan Medicaid’s coverage rules allow them to be funded only for people who once could speak, such as stroke victims, or people who are unable to speak because of a damaged part of the body, such as a cleft palate. The state’s Medicaid rules don’t allow them for people who never have been able to speak because of developmental disabilities.
With the electronic devices, users can select a picture on a screen to generate words. For example, pressing on a drawing of food might generate the words: “I’m hungry.” Famed physicist Steven Hawking uses a type of sophisticated speech-generating device.
All three children’s requests to their HMOS for the devices were denied in 2013. Wayne Law’s Disability Law Clinic learned of the situation and got involved.
Students participating in the clinic, guided by Associate Clinical Professor David Moss, director of the clinic, assist low-income individuals with disabilities on a range of issues, including Social Security, health insurance and special education.
“We took three cases in 2014, all of which involved the same issue for three different children with severe expressive speech impairment,” Moss said.
The three children have different congenital conditions. One has DiGeorge Syndrome, and one has Microcephaly.
A third has Down syndrome, as well as Type I diabetes, and needs insulin shots many times a day. That case in particular had an emotional impact on Lawrence Mann, an adjunct professor for the clinic and associate director of professional skills at Wayne Law.
“The girl couldn’t say ‘I’m hungry, I’m sick, I’m dizzy,’” he said. “When you have a kid with diabetes who requires insulin, that’s huge.”
Moss said: “We decided this is a systemic problem, probably affecting lots of kids, so we started working for all three children and decided to do whatever would be necessary to change the Michigan Medicaid policy.”
In two cases, both involving the same HMO administering Medicaid funds, the law students’ appeals were successful.
“We made our arguments, and they changed their decision and approved the device,” Moss said. “But those kids had to wait nearly two years to get their devices.”
In the case of the girl with diabetes, who is covered under a different HMO, an administrative law judge denied the clinic’s appeal on her behalf.
In August, the clinic and co-counsel Lewis Golinker, who specializes in such cases – representing the girl and the U.S. Society for Augmentative and Alternative Communication Inc. – filed suit against the state in federal court.
“In September, we began settlement negotiations with the state, and the state persuaded the HMO to approve the device,” Mann said.
In October, the girl got her device. The lawsuit is ongoing.
“There are a lot of other kids who will need these devices, and the criteria will apply to our client, too, when her device needs to be repaired or replaced,” Moss said. “The lawsuit continues to try to correct the problem for our individual client and for any other child who might encounter the same problem. We want it clear that they have a right to these devices. Our clients had to wait years, but because of the work of the clinic students, they got the devices they needed.”
Students who were involved in preparing the lawsuit are:
• Abathar Alkudari of Dearborn, a 2015 alumnus.
• Dylan Beadle of Detroit, a third-year student.
• Benjamin Noe of Detroit, a third-year student.
• Rachel Pinch of Dearborn, a 2015 alumna.
• Emily Sullivan of Cass City, a third-year student.
For Beadle and Noe, helping the girl with Down syndrome get her device was rewarding.
Said Noe: “Imagine not being able to speak at all and then finally getting something that allows you to communicate with your own mother in a meaningful way for the first time! The device is necessary for the client to live and be a part of society.”
Federal Medicaid law requires states, as a condition of getting funding, to provide “early and periodic screening, diagnosis and treatment to children under the age of 21.” The clinic’s lawsuit contends that Michigan Medicaid’s policy excluding the speech-generating devices for children with developmental disabilities who need them is illegal, denying them treatment as prescribed.
Having the patience to deal with the process of the lawsuit was sometimes frustrating for Beadle and Noe, both of whom said the clinic provided a good, hands-on learning experience.
“One major lesson learned was how to organize a case from the start in various fashions in order to effectively prepare and manage a case as it progresses,” Beadle said. “Another important lesson I learned was how to deal with various personalities of clients, opposing counsel and judges, and how important it is to prepare for those interactions.”
Said Noe: “I learned so much from Professors Moss and Mann about how to actually go about conducting these cases – the ins and outs of federal cases. I also learned from them the power of simply filing a lawsuit: It forces those against whom you seek relief to actually sit up and pay attention to what effect their policies have on the lives of everyday people, especially young disabled children who quite literally cannot speak for themselves.”
The ongoing federal case is exciting for Moss, who has worked in the area of disability law since 1985, when he graduated from Columbia University Law School.
“It’s not very often in a clinic where you get to take on a systemic problem,” he said. “We try to pick cases small enough for students to be first chair, and we tend not to take impact litigation where there are hundreds of people involved.”
Six to eight second- and third-year law students are involved in the intensive six-credit clinic each semester, and the resources to take on impact litigation usually aren’t available.
This time is different, Moss said.
“This case in particular is one where, by virtue of handling enough of these cases over the years, we’ve seen the pattern,” he said.
For Mann, a 1980 Wayne Law alumnus, the case is a matter of civil rights.
“Historically, I’ve had an interest in racial and gender discrimination,” he said. “Based on my new learning, these issues sit on a continuum with all the other civil rights cases. There are groups of people who have needs and have rights, and, fortunately, we have a legal structure that affords them some rights.”
Moss cites this passage from a judgment in a 1997 case, Fred C. v. Texas Health and Human Services Commission: “Language is the principal skill distinguishing human beings from other animals. The inability to speak can be the single most devastating aspect of any handicap.”
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