No place like home

To refer to a segregated institution as "home" is a stretch. True individuals at Fernald may have known no other residence in decades, but that is because on other options were offered to families. The per person cost of Fernald is over 204,000 per person based on budget and population listed in the article. I challenge the reporter to visit Fernald and determine if he/she believes the individuals at Fernald are enjoying a 204,000 dollar per year quality of life. More importantly, neither the 198 Fernald residents or the 41,000 plus persons with developmental disabilities, in institutions nationwide had a due process hearing before being deprived liberty. When I read the US Constitution I think I read something that an individual could not be denied of liberty without due process. Note: Adult persons with mental illness cannot be institutionalized without a court review. Why human and civil rights as outlined in our Constitution do not apply to people with developmental disabilities I will never understand. I look forward to the day that all persons have the opportunity to enjoy "liberty and justice for all. The group homes may not be the best solution, especially if they are going to house six residents and the individuals will have no say in where the group home is located, with whom they will live or how the home is operated. The better solution is to utilize individual budgets and a self determination model to provide critical supports and services. In brief a capitalist system where an individual is able to decide which services and supports he and she requires and has a say in how to allocate scarce resources. "There really is no place like home" A segregated facility may be someone's residence. It can never be a home. Family,home and community are natural and empowering environments. Institutions result in dependency and loss of freedom. I also ask the reporter to visit Fernald and speak to the residents. I am fairly certain if one asks the residents where they want to live, many would not choose Fernald. In the late 70's I was a houseparent for adults with developmental disabilities, who had transitioned to group homes. Nine out of Nine of the residents were so brutalized by the institutions they were afraid to even visit the facility. In 1998, my daughter Maria sustained a severe brain injury at age 12. Maria is at risk of institutionalization or other form of out of home placement. Maria will tell you the institutions are "hell holes" Maria will also tell you she wants to live in her home, with her family or friends of her choosing. Maria wants to attend our local church and Maria wants an opportunity to be included and build relationships with all people. A segregated facility or group home will not allow for such opportunities. The answer is Individual Budgets and Self Determination based on objective assessments of critical support needs and individual hopes and aspirations. Kind Regards, Frank Tetto www.mycommunitycareteam.com www.tetto.org

Institutions are breeding grounds for abuse and neglect. If Margaret's sister thinks this instition is "home like", maybe she should switch lives with Margaret. It sounds as if Margaret never had an opportunity to have a real life. How many people move out of institutions and a year later request to move back? Don't be afraid Margaret's sister, life on the outside could only be better for Margaret. She should talk to people who have been released from institions and their families.

There are many class action lawsuits across the country because of the unnecessary institutionalization of individuals with developmental disabilities. I speak out for the family of an adult who has very challenging developmental disabilities, who have been waiting for many years to see their son placed in a community home. (“a group home”) Now that the health of his aging parents is failing, the Department of Human Services is offering an institutional placement for their adult son. This of course, is not the placement of choice that the aging parents made so long ago, and for which they have long been planning. These parents now live in fear that no appropriate community placement for their son will be developed in their lifetime, and that an institutional placement will be made as soon as they are gone or too incapacitated to struggle on with their son’s care. There are numerous families of severely disabled adults and children who have been offered only institutional placements, despite their strong preferences that their sons and daughters continue to reside in the communities in which they have successfully spent their entire lives. This tactic of “bait-and-switch”, by giving “lip service to choose”, only then to deny the families choice by offering institutionalization constitutes a denial of 42 U.S.C. 15001, as well as N.J.S.A. 30:6D-2, that families are the primary decision makers regarding the care and living situations that their family members receive. These situations suggest a pattern of discrimination against those individuals with more severe disabilities, as opposed to those with milder symptoms who appear to find it easier to obtain community placements. Severity of a person’s disability should not be considered a reason for institutionalization. Across the country, many individuals diagnosed with serious impairments in cognitive or physical functioning, currently live happy lives in community placements, and many experts believe that the more extreme living situations represented by large congregate placements are especially hard on these vulnerable populations. This unfortunate example of aging parents being deprived of the service choices they have made for their offspring, underscore the Department of Human Services fundamental lack of planning for those who have more complex service needs due to the severity of their disability or dual diagnosis. Clearly the overpriced “one-size-fits-all” option of institutionalization represents the State Agency’s fallback or warehousing solution for those unfortunate individuals for whom it has failed to program in the individualized, family-responsive manner required by law. This situation that has come to my attention exemplifies all that continues to go wrong with the current system of human services provisions. There continues to be ongoing violations of the Americans with Disabilities Act. If we continue to resist change that other states have already enacted, the more difficult, costly, and legally contentious reform will be. If community-based choices are developed and honored now, states can avoid adding new members to the class of individuals suing for their right to be served in the least restrictive environments represented by their home communities. It can also avoid the loss of skills and regression in functioning that too often accompany institutional placement, and can make those leaving an institution more difficult to serve than they would have been if placed in the community directly from their families’ homes. The development of an array of community-based living options for individuals on the waiting list, regardless of their perceived functioning level, is therefore imperative. We need to move the entire system of adult service provision in the most humane, appropriate, and sensible direction. Great progress in the field of developmental disabilities is within everyone's reach. Real choices must be honored in community living for all people with disabilities. Isnt it time for this woman to learn something new?