Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (I/DD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with I/DD.
When The Arc was founded, nearly 65 years ago, it was all too common for doctors to tell parents that the best place for their child with I/DD was in an institution. Emboldened by their collective desire to raise their children as part of their families and communities, and their refusal to accept institutionalization as the only option, The Arc’s founders fought for inclusion. To this day, The Arc stands by the belief that all people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play through all stages of life.
The vast body of research on deinstitutionalization has established that moving from institutional settings and into smaller community-based ones leads to better outcomes for people with I/DD (Kim, Larson, & Lakin, 1999; Larson & Lakin, 1989, 2012). In fact, studies continue to show that people with I/DD benefit from moving to the community from an institutional setting. More powerful than any of the research are the stories from individuals who transitioned from institutions into the community. These stories breathe life into this research and The Arc’s mission.
Dr. Montross’ op-ed offended many readers, but it did highlight a systemic issue. Many health care providers will not accept people with I/DD as clients, or do not feel that they have the expertise to appropriately serve them. Furthermore, there are practitioners who will not accept clients who are reliant on Medicaid as their primary payer of health care services due to low reimbursement rates. Combined, these issues create a system that doesn’t always adequately serve all people with I/DD.
Weaknesses in the ability of some community-based mental health treatment systems to adequately meet the needs of clients does not necessitate the return of people to archaic institutional settings. Instead, it should lead to a public outcry for vast and immediate improvements in the capacity of communities to provide mental/behavioral health care to those who need it. The Arc strongly believes that the solution is not to move back to antiquated institutions. The way forward does not, as Dr. Montross states, “[include] a return to psychiatric asylums.” The way forward includes serving all citizens and demands an evolution in the attitudes of health care practitioners which includes the belief that all people, regardless of disability, deserve the same opportunities to enjoy full lives in their communities.
While there is no denying the issues she references, as often as possible the choice of where to live must be made by the individuals who will be impacted. And, as history has shown, the approach suggested by Dr. Montross has been attempted in the past and it resulted in Willowbrook and countless other atrocities in the name of “patient care.” While community supports for individuals with I/DD can benefit from improvement, we have come too far to take a step back towards segregated settings.
We welcome a discussion with Dr. Montross. Our hope is next time she has a national platform like the New York Times she chooses to consider the desires of individuals with I/DD and the history of isolation and oppression they faced in institutions before making suggestions about what is best for them.