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 ILO wrote and published a blog on a very important annual report, the United Cerebral Palsy’s Case for Inclusion 2015. As we researched this report, and made note of the findings, we were very excited to discover that both Maryland and Washington, D.C. had made tremendous progress in the rankings – both rose to the top ten list for 2015, and both made the most improved list.
DC’s progress, in particular, has been astounding. Since 2007, the state has risen an incredible 41 spots to hit #8; unsurprisingly, this incredible improvement in the way the city serves individuals with disabilities 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 it provides services to individuals with disabilities.
We feel that this story is vitally important; we also feel that it needs to be told, retold, and shared, again and again. We cannot forget neither how far our states have come, nor the importance of continued improvement.
From Institution to Inclusion: A Brief Summary
Parts I & IIÂ
The series begins with Forest Haven, an institution situated just outside city limits in Laurel, MD. This institution opened its doors in 1925 to house and educate D.C.’s ‘feeble-minded’ residents. With good intentions, founders theorized that segregation of these individuals in a bucolic getaway would best allow for their human treatment and education. Unfortunately, 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 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, along with four other families brought forward a lawsuit against Forest Haven, because of the deplorable conditions. 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 the fight for the rights of DC’s developmentally disabled community hadn’t ended, it was just beginning.. DC did indeed create 160 group homes that were intended to offer the residents medical care, educational opportunities, day programs, and employment. However, there was no oversight or system. The group homes were not well monitored, and in some cases were poorly run by individuals that had no experience, training or education in the field. A number of individuals that were placed in these homes after the closure of Forest Haven continued to experience neglect, abuse, and even death. A plaque containing the names of 10 of the individuals who died currently sits in the Department of Human Services headquarters in D.C. as a reminder of the vulnerability of the population being served.
By the year 2002 there was still no system in place. After a searing Washington Post expose and another law suit, the District agreed 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. An independent, non-profit advocacy group, Quality Trust for Individuals with Disabilities, 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. As the report points out, the system is relatively slow moving and resistant when you have a constituency that has little political power.
Parts III & IV
Part three of this series begins with the story of Steven Powe. Powe, a 55-year-old DC resident with 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. Powes story is one of success, emblematic of everything that was missing from 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. As of 2014, 84% of disabled residents living outside of family homes do so in waiver compliant settings of three or fewer people.
The series wraps up with a call to action; an admonition to us readers/listeners/followers that the work is not yet done. As journalist Martin 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 institutionalize 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 our community will provide the opportunity.
More information?
This informative and poignant series is a memorial to the individuals with disabilities who died as a result of poor care, neglect and incompetence on behalf of the state. While it is a celebration of how far D.C. has come, it is also 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 journalism.
Thanks again for visiting our website today. We hope that you were as moved and educated by 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 to learn more about ILO, our self advocates and participating family members, and how we build supportive communities, please contact us. We would love to meet you.
Until next week!
