When it comes to access to mental health, those in Milwaukee County who are in the general hearing population typically have a choice of private practice provider.
But for those who are deaf or hard of hearing, their choices are much more limited.
The deaf and hard of hearing community is under-served in Wisconsin, due largely in part to a shortage of mental health providers who are deaf or have a sufficient understanding of communicating with the deaf and hard of hearing population.
It’s something that appears to have a higher need in the deaf and hard of hearing community. According to a 2016 survey by the Wisconsin Department of Health Services, 24 percent of people with hearing loss have a lifetime anxiety disorder diagnosis and 24 percent deal with depression. Comparatively, those in the general hearing population reported anxiety or depression at a rate of 17 percent each.
DHS named the provider shortage an area of need in its Behavioral Health Systems Gap Report in 2019.
For some time, there was only one deaf provider in Milwaukee County. Three more have more recently obtained their licenses, or at the final stages of acquiring them.
That former sole provider is Katy Schmidt, a clinical social worker and therapist based in West Allis.
“Many providers, including myself, struggle to find employment in Wisconsin and a location that's willing to work with someone like myself,” Schimdt said.
Schmidt said providers are attracted to other states, most notably Minnesota.
"We've already had three great wonderful providers in Wisconsin, and counselors here in Wisconsin moved to Minnesota. There are more openings there that are open to having individuals who can sign” Schmidt said. “I don't know what the issue is with other states being more open-minded and willing to hire individuals who have disabilities, like, for example, people who are deaf like myself we're not exactly sure why, but they're welcomed in a state like Minnesota.”
Minnesota provides more services to its deaf population compared to Wisconsin. While there are some private practice providers in Wisconsin, Minnesota has a statewide coordinator in charge of supervising care to deaf and hard of hearing clients.
Minnesota residents can also find peer support services and substance abuse programs specifically for deaf and hard of hearing patients. In Wisconsin, there are no peer support specialists or certified substance abuse counselors.
“You know you're hoping for the best when someone goes inpatient and that they'll provide interpreters,” Schmidt said. “But you need to make sure that these counselors understand the linguistic and cultural needs of deaf individuals, and that is a big question on the table are those services being provided appropriately.”
Eve Eiseman, the facilitator of Mental Health Core Group, said without that choice, some people may not be seeking the care they need.
“The deaf community is small, and so, if you just have one provider, it doesn't give you much of a choice and there's a lot of trust issues within the deaf community itself, so it's difficult to just rely on one person,” Eiseman said.
Like all healthcare, it’s not a one-size-fits-all approach either. Eiseman said it highlights the need for someone who understands the cultural and linguistic needs of the deaf and hard of hearing community.
"That person can't assume that they're all the same,” she said. "That they all lip read, or they all use sign language."
With the lack of providers, some are left feeling like they’ve been shut out.
Amy James is currently struggling to find a deaf counselor who understands her challenges, as well as understands how to communicate with her, something she’s said hearing counselors are unable to grasp.
“They don’t understand my culture,” Amy said to her mother Margaret James, who translated. “They don’t understand about deaf people. If I had a deaf counselor, they have the same background, the same communication as me. They would understand my language and culture.”
A conflict of interest is keeping her from seeing Schmidt, leaving her with few options.
"Amy is what they call a unique language user,” Margaret said. “She’s not fully mastered ASL (American Sign language) and she’s not fully mastered English. And it takes a deaf person who has grown up with other deaf people to really understand what she’s saying.”
Schmidt said potential conflicts of interest are a growing problem as the area’s only provider, especially as her services expand to include patients are far away as Rhinelander and Eau Claire.
“I wouldn't be able to see everyone that comes to my door that would like to receive services,” Schmidt said. "We need to make sure that things are an appropriate fit and make sure there's no perceived conflict of interest and go through the treatment experience as well.”
Those involved say part of the problem is the funding allocated to mental health resources in Wisconsin, and it goes back for decades.
In 1979, the Governor’s Committee on Deaf and Hard of Hearing People sent a report to Gov. Lee Dreyfus calling for funds to local health departments to help them provide specific services to the deaf and hard of hearing community.
“In fact, it has been estimated that hearing-impaired persons have three times as many life adjustment problems as hearing persons,” the committee wrote.
The committee also recommended training for those providers to properly offer those services, coordinated state-wide through the Mendota Mental Health Institute in Madison.
More than 40 years later, some funding may become available.
Gov. Tony Evers’ proposed budget allocates $150 million to expand access to mental health care in Wisconsin. It includes a behavioral health treatment program for the state, including nearly $2 million to help “... offer culturally and linguistically affirmative services” to deaf and hard of hearing individuals.
State Rep. Jonathan Brostoff, D-Milwaukee, pushed Evers’ office to include the funding in his budget.
The plan would still leave a need for substance abuse and peer support services, but Brostoff hopes it helps lay the groundwork for that in the future.
“If this happens and moves forward it's a huge step in the right direction for all those that set the precedent,” Brostoff said. "And puts out a lot of people's radars that mental health access for the deaf community is very important.”
He's fighting to keep it in the budget, as the Republican-led Legislature and Democratic governor prepare for what could be a contentious budget year.
“There's just some natural friction there, but on this issue, I think it's something where we can all really come together and agree that deaf mental health access is something all Wisconsinites want to improve upon, and it really is it's above this partisan bickering,” Brostoff said.
Those who have been fighting for decades for funding are holding out hope.
“Mental health is the number one priority for the National Association of the Deaf,” Eiseman said. "It's a problem all over the country, but when you're in a state where you know, where you can actually feel that you might be able to do something about it, it's hopeful and that's why we're very hopeful about the item in the governor's budget.”
Along with the governor’s budget, Brostoff’s office is working on standalone legislation aimed at also expanding access to care. Among the plans are statewide guidelines for behavioral and mental health care.
Stakeholders have been asking for state-wide coordination, saying individual counties may not recognize the need, or don’t have the funds needed to fill the gaps in coverage for their deaf and hard of hearing residents.
If you or a loved one is struggling to access mental health services, the experts we spoke with shared the following resources to help:
- If you'd like to speak with someone directly, you can reach out to the following experts:
- Eve Eiseman, AAMFT, email@example.com
- Jack Spear, PhD, firstname.lastname@example.org
- Alice Sykora, MEd, email@example.com
- Katy Schmidt, SW, Katyschmidt@gmail.com
- Louise Mollinger, family member, firstname.lastname@example.org
- Wisconsin Office for the Deaf and Hard of Hearing
- National Association of the Deaf
- Hearing Loss Association of America