Mental health proposals from Sen. Kamala Harris (D-Calif.), Sen. Amy Klobuchar (D-Minn.) and South Bend, Ind., Mayor Pete Buttigieg (D) have sparked backlash from some advocates with disabilities, who argue that the plans would increase involuntary institutionalization.
Plans by all three presidential candidates embrace a repeal of Medicaid’s Institutions for Mental Diseases (IMD) exclusion, which bars the federal program from paying for inpatient psychiatric treatment in facilities with more than 16 beds, according to Sara Luterman, a Washington, D.C.-area journalist focusing on disability issues.
“The idea behind it is to prevent the government from paying for warehousing people with mental health conditions in asylums like we used to in the 1950s,” Luterman told The Hill. “Many parent and provider advocates would like to repeal the IMD exclusion. They use ‘access to care’ in an Orwellian sense — it’s access to coercive treatment, forced medication and locked wards.”
Harris’s plan, Luterman said, is “worse,” because it could weaken privacy protections and expand the use of so-called assisted outpatient treatment.
“In some states, people can be court-ordered to take medication or undergo other psychiatric treatment,” she said. “This seems reasonable on the surface — sometimes when people have a serious mental illness, they can struggle to recognize that there’s even a problem.
“But psychiatric medication can have heavy side effects,” she continued, “and failing to make treatment a cooperative process destroys long-term trust necessary to manage what are serious, lifelong conditions in any long-term sense.”
Victoria Rodriguez-Roldan, director of the Trans/GNC and Disability Justice Projects at the National LGBTQ Task Force, agreed.
“In the case of the Harris campaign plan, we have multiple problems,” she told The Hill. “Some that stick out to me are first, raising the number of beds in inpatient psychiatric facilities and eroding HIPAA’s confidentiality protections around mental health care.”
“These are both dangerous propositions in that they ignore the move towards deinstitutionalization and the need for solutions that do not boil down to warehousing and abusing people with mental illness,” she continued. “These are also common arguments of those who seek to blame people with mental illness for gun violence.”
The reason there are fewer hospital beds than before, Rodriguez-Roldan told The Hill, is “precisely because many of the conditions for which we’d automatically warehouse someone in an asylum a few decades ago now are seen as something that can be successfully treated in an outpatient capacity where people can be part of the community and lead happier, productive lives.”
Kathy Flaherty, executive director of the Connecticut Legal Rights Project, told The Hill that assisted outpatient treatment is frowned upon by many experts in the mental health field.
“Involuntary outpatient commitment … what they call ‘assisted outpatient treatment’ because it sounds nicer … that is treatment by force in the community,” Flaherty said. “We have defeated it every time it’s been proposed in Connecticut, but what that gets us as a state is a failing grade from a well-funded policy org whose sole mission is to pass laws in every state … regardless of whether states actually have the budget or infrastructure to support implementation.”
Flaherty added that it was “tremendously disappointing to see expansion in any candidate’s platform … and it’s in more than one.”
Advocates said the plans, while well-intentioned, were reminiscent of policies frequently advanced by family members of people with disabilities rather than the patients themselves.
“I have to believe, to maintain my own sanity, that most family members are coming from a good place. They propose things with the best of intentions,” Flaherty told The Hill. “However, often the things they suggest … [like] forced treatment, lowering of HIPAA privacy protection … take away our agency ‘for our own good.'”
Rodriguez-Roldan echoed Flaherty’s sentiments.
“A basic rule in mental health advocacy is that if the policy is being proposed solely by family members, then odds are it will be harmful,” she said. “This is because often we operate with the assumption that those relatives are the ones who know best, rather than those with lived experience, and fail to acknowledge how many times, those loved ones are not necessarily so loving, such as domestic abuse situations.”
“The disability movement believes very firmly in the motto of ‘nothing about us without us,'” she continued, “and that means that people with the lived experience of having mental illness must be a part of the discussion.”
The plans, advocates say, illustrate the need for people with disabilities to be front and center in lobbying on such policies.
“There’s a perception that issues like ‘IMD exclusion’ are too wonky to matter,” Luterman said. “We need to get better at talking to the general public.”
“All we can do is share information,” Flaherty added. “It’s the elected officials or their staff who have to carefully consider all the information they receive and then make responsible, well-informed decisions.
“Clearly we are still learning how to most effectively communicate our message to folks at the national level, but I do think ultimately it’s on them to do a bit more to facilitate access.”
The Hill has reached out to the Harris, Buttigieg and Klobuchar campaigns for comment.