From Institution to Inclusion: A Look at WAMU’s Illuminating Series on DC Disability Services

 April 7, 2016
Posted by M&LAdmin4

Thursday April 7th, 2016

Hello everyone, and welcome back to the blog this week! We are happy that you have taken time out of your busy schedule to join us.

As our regular visitors may be aware, a few weeks ago M&L staff wrote and published a blog on a very important annual report, the United Cerebral Palsy’s Case for Inclusion 2015. While covering the annual Case for Inclusion has become a treasured tradition at M&L (this is our third year running), this year was particularly exciting for us, as we were able to share with you the impressive change that Washington, D.C. has undergone in its state rankings. In 2015, D.C jumped 41 spots to hit #8, making the report’s most improved state list, as well as reaching the top ten!

This incredible improvement in D.C.’s commitment to inclusion has not gone unnoticed. A few weeks ago, WAMU 88.5’s Kojo Nnamdi Show aired a four part series titled From Institution to Inclusion. This series – chronicled through audio, visuals and prose – provides listeners, viewers and readers with a captivating and honest narrative of the four-decade long journey the District has undergone in regards to the way the it provides services to individuals with disabilities. It is a glimpse into the transformation of D.C. from a state that relied upon the use of a segregated, isolated and abusive institution to serve individuals with disabilities into a state that has recently been named a national leader in “caring for and serving its residents with disabilities.”

Here at M&L, we feel that this story is vitally important; we also feel that it is imperative that this story is told, retold, and shared, again and again. We cannot forget how far that we have come, nor can we stop trying to improve. Please join us as we take a closer look at this very important series.

From Institution to Inclusion: A Brief Summary

Parts I & II

The story begins with Forest Haven, an institution situated just outside city limits in Laurel, MD. This institution, which opened its doors in 1925, was created to “house and educate D.C.’s ‘feeble-minded’ residents, citing segregation of these individuals in a “bucolic getaway” would “best allow for their human treatment and education.”

The institution would do little to live up to these lofty ambitions; eventually, its record of poor care, neglect and abuse would lead to it being labeled by critics and family members of residents as being nothing more than a “holding institution”, or a “warehouse” that “provided only the most meager custodial care” for its residents.

One of the early families to really speak up about the conditions at Forest Haven was Harold Evans, whose daughter Joy was a resident: “I would walk into a room and here would be 40 or 50 people with one staff,” he recalls. “Many of them wouldn’t be clothed, they’d be wearing diapers. They had no day programs, nothing to do during the day, nowhere to go. The staff that they had were inadequately trained.” In 1976 the Evan’s family – propelled by the poor conditions at the institution – brought forward a lawsuit against Forest Haven, and the suit eventually expanded to include all residents of Forest Haven and the U.S. Department of Justice.

While the lawsuit did result in the eventual closure of Forest Haven, DC residents with disabilities were still not receiving the proper care and services that the lawsuit called for. DC did indeed create 160 group homes that were intended to offer the residents medical care, educational opportunities, day programs, and employment. Despite these good intentions, these homes were not well monitored, and in some cases were poorly run by individuals that had no experience, training or education in the field. In short, a number of individuals that were placed in these homes after the closure of Forest Haven continued to experience neglect, abuse, and death. A plaque containing the names of 10 of these individuals currently sits in the Department of Human Services headquarters in D.C.

When the news of these poorly run and poorly managed group homes became common knowledge (as a result of a Washington Post series and another lawsuit) it was agreed upon that DC needed to “improve services available for individuals with disabilities, as well as to create and improve the quality control mechanisms needed to make sure these services were working.” Quality Trust for Individuals with Disabilities, an independent, non-profit advocacy group, was created to serve both roles – and to monitor the city’s compliance with the Evan’s lawsuit.

The Evan’s lawsuit, despite many changes made by D.C. to the way it delivers services, is still before the courts. Another hearing to decide whether DC has met the criteria necessary to close this lawsuit is scheduled for this month.

Parts III & IV

Part three of this series begins with the story of Steven Powe. Powe, a 55-year-old DC resident (that happens to have a developmental disability) has been living independently for the last five years. Powe holds down a part time job, and manages his independence through family support, as well as the support of a city-funded aide worker. Powe’s story is one of success, emblematic of everything that was wrong with Forest Haven. It is through Powe’s success that we can see exactly why D.C. has rapidly risen to the top ten in a report that ranks states based on how well they provide services to individuals with disabilities.

DC’s success with improving services for individuals with disabilities is also credited to the city finally being able achieve stability in their Department on Disability Services. In 1997, Laura Nuss joined this department. Three years later, she became DDS director, a position that she still holds today. Nuss herself credits some of the success to the city’s adoption and increased use of the Medicaid Waiver Program, a “menu of services that can support people in a variety of ways.” This program enables people to receive the services that they need to live in a variety of different settings, outside of large group homes and institutions.

The series wraps up with a call to action, of sorts; an admonition to us readers/listeners/followers that the work is not yet done. As Austermuhle writes, “In recent years, the push for full integration and inclusion of people with developmental disabilities has turned to employment. Many people with developmental disabilities say that full independence can only come when they have a job and a shot at financial security.” This realization, the push to truly “deinstitutionalize” individuals with disability is the basis of the Employment First movement, the idea that any funding source should count employment as its first service priority. Employment rates for individuals with disabilities is on the rise, however, many people in the field feel that more can be done. The last installment of the series is a video, titled Why One Federal Agency Decided to Hire People with Developmental Disabilities – an example of how individuals with disabilities can be positive assets to any working environment, if we only provide the opportunity.

More information?

To wrap this all up, we at M&L have just a few more things to say about this series. In our opinion, it is many things; it is a memorial to the individuals with disabilities that died as a result of poor care, neglect and incompetence on behalf of the state. It is a celebration of how far D.C. has come, but it is also a warning and a reminder to the state to continue working to improve the lives of residents with disabilities. It also acts as an inspiration for all organizations that advocate and serve individuals with disabilities to continue to work hard on behalf of their clients, and to remember that their hard work has not gone unnoticed, or unrewarded. We urge everyone to listen to and read this series in its entirety – and we congratulate Martin Austermehule and WAMU for an incredible piece of journalist work.

Thanks again for visiting our website today. We hope that you were as moved and inspired and educated about this story as we were; we also hope that you share this blog post – or the series itself – with your family members, friends, and colleagues. If you would like more information about the services that we provide to families with special needs, and how you can work to improve the lives of your family and your family member with disabilities please contact us! We would love to meet with you and discuss the hopes and dreams that your family has for the future.

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