It is difficult to believe that a father with a 28-year record of active advocacy for the choice of facility-based care and adamant objection to community placement for his daughter with profound/severe intellectual disabilities would voluntarily remove his daughter from a facility where he was president of the parents’ association and place her in a community home. 

Yet, Bill Haas, the former chair of VOR’s State Coordinator Committee and principal author of the VOR manual detailing how to effectively challenge forced community placement has in fact done just that.   

To read more about the Microboard model and how it is working for his daughter, Bridget, click here.  

For more information, visit VOR's Legislative Page.

VOR said goodbye to long time member and former VOR Board Member, Skip (Gustav) Landen on December 10, 2009.  Skip was blessed with many more years of happiness and good health, more than even he thought possible following a lengthy battle with cancer.  His widow is long-time VOR member, Marian Hill-Landen, someone he found love with later in life. Donations to VOR are being accepted in Skip's memory.

A Press Release was issued and The Star Ledger featured the event and survey.

Videos from the press conference are also available: http://vimeo.com/8177809 (Sims, intro), http://vimeo.com/8057837 (Sims, extended), http://vimeo.com/8059191 (Rocco Mazza, sibling), http://vimeo.com/8177135 (Assemblywoman Huttle on Choice), and http://vimeo.com/8177251 (NJ State Senator Bucco on Choice).

A Press Release was issued and The Star Ledger featured the event and survey.

Videos from the press conference are also available: http://vimeo.com/8177809 (Sims, intro), http://vimeo.com/8057837 (Sims, extended), http://vimeo.com/8059191 (Rocco Mazza, sibling), http://vimeo.com/8177135 (Assemblywoman Huttle on Choice), and http://vimeo.com/8177251 (NJ State Senator Bucco on Choice).

Noting that deinstitutionalization was the plaintiff's central motivation in this case, Judge Payne held that, in this situation, the State has indicated that no one will reside at the new SEVTC who doesn't want to be there.

"Here, there is evidence that shows that many individuals will choose to live in the new facility. In fact, at least 84 of the 155 legal representatives of the current SEVTC residents have made formal pleas to permit their loved one to remain in the new facility rather than be placed in community housing (citation omitted). Thus, the argument made by Arc and the United States regarding the risk of institutionalization fails to account for a key principle in the Olmstead decision: personal choice. And here, where more residents desire to remain in institutional care than the new facility can provide for, there is little to no risk of institutionalization for those whose needs do not require it and who do not desire it."

Click here to read the full decision.

About the author: Ms. Mettler is Carsten's mother. She tells the story of her son's long journey to Sonoma Developmental Center in Northern California. His journey involves a very successful "inclusive" educational experience to a sad saga of one failed group home placement after another, including several incarcerations. This long journey led Carsten to Sonoma, where it seems he is now on the road to happiness.

I have always been a fervent advocate of the concept of “Inclusion.”

Qhen my son Carsten was middle school age I became very active towards having him included in the same (very unique) school my other two children were attending. I felt that as a family it was important to share the same school experience.

It took a lot of convincing and sharing of information about the benefits of inclusion, but finally it became a reality. Carsten spent many fabulous years at this school, the “Open School.” He participated in trips to New Mexico and Mississippi, he took yoga classes, art classes, music, woodworking, cooking, etc. He apprenticed in the school cafeteria and then he worked in a city cafeteria, independently taking the public bus. 

In the year he was graduating, however, Carsten started to experience an increasing number of outbursts. Life with him at home became precarious and barely manageable for me.

Since his dad, Charles, was already living in California at that time, we felt it would be a great opportunity for Carsten to live with his father and attend the wonderful Vine Village program in Napa. The first year was a success. Carsten created many beautiful pieces of art and was very happy. Then his episodes began to increase again. His lost his place in Vine Village and a new living situation had to be found.

From there on a rather sad saga began from group home to group home. Although in every group home and day program there would be someone who would have a deeply caring relationship with Carsten, it must be said that no one was truly trained in how to support him when he had his intense outbursts.

Most staff simply applied whatever method of containment seemed to work for them. Some threw themselves with their full weight upon him, some held him as tightly as possible, always struggling and most of the time threatening Carsten with jail or institutionalizing him and reproaching him about his “bad” behavior. 

Many staff members themselves were struggling with emotional and mental issues and with minimum wage living conditions. Carsten, used and capable to doing many things and loving to work, would often sit for hours without anyone involving him in meaningful activities.

Being bored used to be the worst punishment for him. There was never a team work or any kind of consistent approach to support Carsten emotionally, psychologically, psychiatrically and physically. We privately paid a psychiatrist who had been recommended to us. Unfortunately Carsten’s episodes continued to increase in intensity and frequency. He was taken in handcuffs to a crisis center in the middle of the night and from there to the next home. After a year and a half in a very neglectful place the owner provoked an incident in which Carsten was left unattended by his one-on-one and had an outburst during which he broke many things in his room. The owner, eager to get rid of Carsten, called the police and had him taken to jail.

Carsten cannot advocate for himself in the least. He speaks fairly little and cannot express his needs. He had no idea where he was and why he was in jail. It was a nightmare for him and us parents. After 14 days another home was found for him. This time we were lucky and he enjoyed a very caring staff. Unfortunately once again his outbursts were too intense to be manageable in the community. Finally he was placed at the SDC. By the time he arrived there he had fallen through the cracks many times over as far as his medication was concerned. With every move his meds were simply increased or switched and new ones added. He was completely  traumatized, overdrugged and had developed a tremor that you only see in the very advanced stages of Parkinson’s.

At first I had great concerns about Carsten being admitted to SDC. My notion of an institution, I confess, was very much influenced by the stereotype movies such as One Flew Over the Cuckoo’s Nest promote. This attitude changed rapidly as I got to meet staff. A teacher myself I could immediately sense the passion and professionalism that lives in the people who work here.

Carsten has been at SDC now for three years. Every day we have counted our blessings. His care has been outstanding. The teamwork is amazing between all the people who share the responsibility for his well-being. As his mysterious episodes continue, every possibility is explored in trying to find out the etiology of his condition and how to alleviate his problems.  There has never been an acceptance of the status quo (“He’ll just always be this way” – as we got to hear in previous settings) and the effort to support him in positive ways has never lessened. Here I can count on the psychologist to work with the staff and with the psychiatrist. No change in Carsten’s body or mind goes unnoticed.

The first goal at SDC was to slowly wean Carsten off these mind numbing medications. We were purely lucky that the tremors were still reversible. There had been no guarantee that they would vanish in spite of tapering the medication. Gradually Carsten regained his old self that is funny, witty and very social. He is still wary of leaving the house he lives in for fear that having an outburst might end him up in jail again. We as parents have also had time to slowly heal from the constant fear for Carsten: fear that he would be thrown into jail again, fear that he would be mistreated, misunderstood, neglected, abused.

There is much hope here at SDC. Carsten has not even begun to truly take advantage of all the opportunities open to him here at SDC. In his “previous” life at home Carsten was an avid gardener, cook, custodian, artist, woodworker, landscaper, farmer, courier and much more.  I am looking forward to a time when he will feel safe enough again to roam freely through SDC on a hundred meaningful missions. I will know that here he is well-protected, safe, and yet free to live as independently as possible. I am dreaming of the farmland that was once available here for the clients to be used again and for Carsten to be the master composter. Imagine healthy food grown locally, organically and by your own hands. That would be true happiness for Carsten, for us, his parents, and I am sure for many of those who live and work at SDC.

About the Author: Ms. McDonough is a volunteer at Fernald Developmental Center in Waltham, Massachusetts. She wrote about her experience as a Fernald volunteer in college application essay.

Hide-and-seek is a game in which the searcher’s goal is to find another individual hidden in an unknown location. This can be seen as a simple, but yet still challenging task. However, one should ask herself: “How much more challenging would the game be without knowing who or what one is seeking?” This is another version of ‘the game’— ‘the game’ of searching for one’s future calling. From my personal experience, I was not aware that my calling was hidden in my community service.

My service of volunteering at the Fernald Center in Waltham, Massachusetts, the oldest residential facility for the mentally retarded in the country, is what I consider to be the location which my calling chose as a ‘hiding spot’. After discovering this spot, the doors to my future opened.

Every Sunday morning at 9:00AM, I take part in volunteer work at the Fernald Center. This center is home to many mentally challenged residents, and it serves as a place for family and friendships. My service consists of transporting the residents that are unable to walk to and from a Chapel Mass. Instead of being a chore that I must ‘suffer’ through so early in the morning, I see this service as being a definite life-changing experience in which I am incredibly lucky to participate. I do not simply push residents in their wheelchairs, I build strong relationships with each and every one of them.

During my times of service, I have come to know many of the residents at the Fernald Center quite well. One of the women that I normally escorted to Chapel was a woman in her nineties. Her name was Anna. She always had a smile on her face and her innocence beamed so brightly when she was present. Whenever I would say “Hi” to Anna, she would reply with a “Hi, friend!”, and she would then grab my arm and tell me that she loved me. Anna was a very outgoing person who enjoyed the presence of others. She was later transferred to a group home and she recently passed away. Knowing that she has been taken from her home against her will made me realize how these residents had no voice at all. I now know that I needed to become a voice for them in order to protect their innocence.

Another resident whom I have been given the chance to know is a 93 year old man named Teddy. Teddy, just like Anna was, always seems to be in such a happy mood. When I first saw Teddy shaking and clapping his hands to the beat of the songs being played during Mass, I realized how important this Mass was to him, and how much he must have looked forward to taking part in the celebration every week. Also, I have come to know that Teddy has a strong passion for baseball cards. Every week I bring in a few cards for him, causing him to shake in excitement and reach out his arms to embrace me. Sometimes he will even swing an imaginary bat while seated in his wheelchair as a hint that he is waiting for his cards. Such a simple thing can be such a valuable part of another person’s life. By getting to know Teddy, I have come to realize how tragic it would be for him, as well as all of the other residents, if their Mass and the social contact surrounding it was cut from their lives. Unfortunately, this sad thought may become a reality as the state makes its final decision as to whether or not the Fernald Center will be shut down. If this facility is taken away from the residents, they will not be the only ones affected, for I believe that my heart would break. Teddy and Anna have given me the love and passion that I need in order to work for the mentally disabled. Knowing that these residents may be taken from their home at any moment has pushed me even further into pursuing this calling.

Due to this experience, I believe that I can make known the needs of these mentally disabled individuals. I want to be a voice for these people and work my hardest to protect their pure innocence. I believe that a benefit of my higher education will be to enhance my ability to assist others like Anna and Teddy. I want to work hard in order to create future opportunities that can serve as ways for me to follow my passion. Whether it is through a career in occupational therapy, art therapy, counseling, or psychology, I believe that I can reach my goal. Anna and Teddy are two individuals that have assisted me in my search for my once hidden future. My ‘game’ of hide-and-seek has come to an end, and I can now say to my future: “I found you!”

 Bequests

A will is simply a legal record of a person’s wishes regarding the eventual use of assets accumulated during a lifetime. These instructions regarding the dispensation of the assets are bequests.

A will is a very powerful instrument, as it gives you the opportunity to:

1.  Direct to whom and when distributions are to be made;

2. Choose the individual or individuals to carry out your wishes;

3. Select a guardian for minor children and adult family members adjudicated incompetent; and

4. Preserve as much of the estate as possible through the judicious use of tax saving
devices and opportunities.

Without a will, your estate will be distributed according to state law. It is unlikely that the state legislature is familiar with your wishes.  Distant relatives may share your estate instead of those individuals and charitable organizations you want to support.

While a will is a free standing document, it can also be used to create a variety of other plans that take effect either immediately following your death or many years thereafter. The future security of your surviving spouse, children, or others can be assured through a will.

Charitable Bequests

As a form of giving, charitable bequests provide flexibility, because they may be changed at any time during your life. Bequests can be made in memory of a loved one, which provide a meaningful way to create a memorial that lives on in service to others.

Through a bequest to VOR  (Voice of the Retarded), you can provide financial stability to ensure that we are able to carry out our mission for years to come.

To make a charitable bequest you simply direct in your will that your interest in certain money or property be transferred to a designated charity. Your estate will be entitled to a charitable deduction for the full, fair market value of your gift. There are several forms of an outright bequest:

Specific Bequest-A bequest of this type may involve the designation of the precise amount of money or the specific property (e.g. specific shares of stock, real estate) that you want VOR to receive.

 Residuary Bequest-Through a residuary bequest VOR will receive all (or a portion of) your estate after all debts, taxes, expenses, and all other bequests have been paid. It may augment a general or specific bequest to VOR, if the size of the estate allows, or may ensure that other beneficiaries receive their bequests prior to distribution to VOR.

Percentage Bequest-You may direct that VOR receive a percentage of your estate, as part of the residuary estate. This bequest will change proportionately with the growth of your estate.

Contingent Bequest-Is important to provide for the situation of when a beneficiary dies before you or disclaims the property you are leaving them. To prepare for such an occurrence, consider name VOR as the contingent beneficiary.

Writing a Bequest

Wills and Trust Agreements should be drafted by an attorney. When including a bequest to VOR in your will the following language may be used: "I give, devise and bequeath, to VOR (Voice of the Retarded), ______ percentage of all the rest, residue and remainder of my estate (or _________dollars, property, security, etc described below) wheresoever located to be used for the benefit of VOR (Voice of the Retarded) in such manner that the Board of Directors thereof may direct.”

A will often includes bequests to more than one charitable organization. Please consider including VOR as one of those charitable bequests.  VOR can receive bequests for unrestricted and restricted purposes.

If you would like additional information regarding leaving a will bequest or other type of gift to VOR please contact; Julie M. Huso, Executive Director, 605-370-4652. 

For full letter click here.

For full letter click here.

Residents of Illinois’ private facilities for persons with developmental disabilities and their families celebrated an early-July decision in Ligas v. Maram. The lawsuit, filed by Illinois’ Protection & Advocacy against the State of Illinois, has concerned families of private facility residents after learning of its filing in 2005. The lawsuit, filed by just nine plaintiffs, was filed on behalf of a class of 6,000 people.

The parties (plaintiffs and the state) proposed a settlement in December 2008. In response, 2,500 written objections were submitted and 250 people showed up in court on July 1, 2009 to register their objections with the judge.  VOR objectors were represented pro bono at the Fairness Hearing by Judith Sherwin, an attorney from the law firm of Shefsky & Froelich (Chicago, IL). Most other attorneys for the objectors also participated pro bono.

Just one week later, in a three page decision, the Chief Judge Holderman issued an opinion rejecting the proposed settlement and decertifying the class, relying, in part, on the Olmstead decision. Objectors could not have asked for more.

"By decertifying the class, we believe the judge recognized that the disabled community -- like any community -- is too varied to be treated as one monolith," said Bill Choslovsky, an attorney for Misericordia families, a private facility in Chicago, Illinois. "It also recognizes that when it comes to caring for our most vulnerable members of society, one size does not fit all, and true choice is a two way street; it recognizes that the disabled are too varied to be shoe-horned into a settlement against their will that might help only some at the expense of others."

Our son has been successful because of a 10 year period he lived in a large facility and because he works daily in a large facility now while living at home.  He is now 47.   Here is his story:

During the 10 years he was there he learned independence and to do many things by himself and when to ask for help as well as how to help the physically handicapped men living with him.  Returning home on his 17th birthday, John Henry went to public school until he reached the age of 23.  Since then he has been employed by Pecan Grove Training Center for 24 years and is able to live at home and use the independent skills he learned at Ruston State. 
 
John Henry is employed at Pecan Grove Training Center as a dishwasher, food scraper, and pot cleaner and the person who puts deliveries on the shelves and/or in the freezer/refrigerator.  He rides city buses to and from work.  He uses independent skills he learned while at Ruston State School in order to accomplish all of this.  John Henry has been raised by the central Louisiana community.  Families like their children being around him to help them learn tolerance and acceptance of people who seem “to be different” – people of God in different religions particularly open their arms to him. 
 
John Henry loves God and he knows God loves him.  He has been an avid “church-goer” and attends often in 1 week a Methodist service, a Baptist service, a Pentecostal service and a Catholic Mass. 
 
We have not been able to keep him from kissing or hugging the pretty ladies.  He is always on the “go” and ready for action and does not like to sit and do nothing.  The local high schools use him as a runner and a water boy at their athletic events which means so much to him.  Louisiana College coaches, team players and their families even welcome him. 
 
 He visits nursing homes and helps when events come to town (circuses, rodeos, etc)  he helps get the residents from vehicles to inside the event and then helps at the end to get residents back into vehicles. 
 
For almost 30 years John Henry has had a Thanksgiving Day Parade, twice around the block in his neighborhood around 5 o’clock.  He has watched the Macy’s Parade and the Philadelphia Mummers Parade, eaten too much, watched football and at 11 years of age wanted to be in a parade.  Two of his uncles and his daddy got out pots and pans and began to walk down the block with him and neighbors who were tired of being inside came out to see what was happening and joined in.  Now the City Police, City Marshall, Sheriff, and deputies, the fire department, the ambulance company, the high school bands and over 200 people join in the twice around the block parade with John Henry in the lead with his whistle directing everyone. 
 
He rides his bike all over and the community watches over him – many bringing him home with his bike in the back of their car or truck when the weather turns bad, he is out of his area, or any excuse he can find. 
 
When John Henry’s dad and I asked “Why” God answered with “Why not” and we took that and became strong advocates for the mentally retarded.  Our company manages a 120 bed residential training center, one daughter and one granddaughter are special education teachers. 
 
There is no one answer right for everyone – some need institutional care, some group home or supervised independent living and some can make it at home.  Because of Ruston State School and all the skills he learned while there, John Henry is able to live at home today. 
 
VOR must continue to fight for individual rights.  John Henry enriches the life of so many and has taught me so much.  Don’t try to fit everyone in the same mold – you are different and have different opinions – so are and do our special people.  God made us all. 
 
Thank you VOR for all you do to get our message to the masses.