NYAPRS Note: Woody Wilson, longtime champion for adult home residents and President of the Board of their grassroots organization CIAD, passed away last month and is honored and remembered below in a very touching way below by CIAD executive director Geoff Lieberman.
Perhaps the best way to know and honor Woody is through the power of his own words below. As you’ll see, Woody had a gentle but plainspoken power and was a strong leader and role model for a community that was just beginning to find its own voice.
And he was an advocate for rehabilitation and recovery for residents from the very start, when those words and concepts were unknown to the resident community. We honor Woody today for him today for his pioneering leadership and great big heart.
Woody Wilson: President of CIAD
What does it mean to be a resident of an adult home? It means a loss of identity. A loss of purpose, whatever that purpose might have been. On the first day of your admittance, you are told that there are certain things that will be done for you. You will have a housekeeper to clean your room, to provide you with clean linens, wash cloth and towels once a week. You will receive three meals a day and a snack in the evening. You will have laundry service. You will be provided with recreation and you will receive a personal needs allowance. And you may come and go as you please. There are some state regulations and house rules that you must obey.
It is not long before you feel that the things that are done for you are being done to you. You receive clean linen, wash cloth and towel when and if available. Your room is cleaned on a hit or miss basis. The three meals and snack you receive cost a dollar and eighty cents. You may think you can imagine what these meals are like, but you are wrong. They are much worse. I never knew there were so many beets, carrots, chick-peas, and broccoli stalks in the world. When you send your clothes to the laundry it’s like gambling. You never know what you will get back. Recreation is bingo, Trivial Pursuit and other interesting things. These things are so interesting that they would not hold the attention of a ten year old and are not well attended to say the least.
The personal needs allowance is the most important thing to you. You learn very soon that you must make yourself a budget and stick to it no matter what, because your personal needs allowance never covers your monthly needs. You must make a disposable razor last at least a week. You don’t get a haircut when you need one but when you can afford one by doing without other things that month.
Clothing must be replaced – for this you must save for months. If you need new shoes, it is better to get the old ones half-soled since it will cost about thirty-five dollars out of your monthly allowance. A winter coat or jacket is something else again. You had better have saved up for a new one when the old one falls apart, if you don’t want to come and go as you please in rags.
In the hot summer months you may think of having air conditioning in your room. But that would cost you and your roommate as much as $300.You and your roommate’s combined personal needs allowance is $284. Any mail that comes for the residents can not be important enough to see that the resident gets it the same day it arrives. If you get mail on Friday, and the administrator hasn’t had a chance to check it before he leaves, you will not get your mail until Monday or Tuesday. Medical care consists of residents being lined up to see the doctor, and then only for three to four minutes.
And it seems no one told the staff that they are there to serve the residents. They think they are there to keep the residents in line to make sure the rules are obeyed. They look on the residents with varying degrees of contempt. There is no thought taken of the residents as individuals. They are dealt with as a group. So the residents must respond as a group through the resident council. Resident councils try to work with the administration and staff to improve the conditions in the home when possible. Anyone who speaks up for themselves too often is threatened with a 30 day notice or forced re-hospitalization. This is done loudly and clearly so that the other residents will know better than to complain or argue about anything that goes on in the home. Given these circumstances residents have to turn to outside agencies such as the regulatory agencies, CIAD and MFY Legal Services. Sometimes they are all needed. In many homes the administration is only interested in the bottom line and passing the state inspection, not on meeting the individual needs of residents or improving the quality of their life. And we have all recently read about homes where conditions are deplorable and downright dangerous.
Residents have an important role to play in any revitalized inspection and enforcement system. They should be involved in training inspectors, and residents and resident councils should be able to meet with inspectors during exit interviews at the end of state inspections to find out the results of the inspection. Residents should have their own standing to move for receivership. And we must go much further. Mental health services must focus on rehabilitation and recovery, not maintenance and control. There should be the expectation that for those who can, people should transition to other more independent settings.
Dear Friend of CIAD,
CIAD lost our great leader and friend, Woodrow Wilson, President of the Board, last month. Everyone knew him as Woody. He was the powerful, steady and articulate voice for CIAD for over 20 years. He presided over the many defining moments of the organization during that time: CIAD’s move to focus on adult home issues; our work leading up to and in the wake of the New York Times’ Pulitzer-Prize winning investigation of adult homes; the first Adult Home Resident Speak Out, still going strong after 15 years; air-conditioning residents’ rooms; giving resident councils significant power over the EQUAL Grants Program, and responding to the plight of 1,000 evacuated residents in the wake of Hurricane Sandy.
I have fond memories of traveling with him across the state, to Binghamton, Long Island, and Staten Island, and getting lost along the way more often than not. But he kept the organization and me on track when it came to the important things: sticking to CIAD’s empowerment mission, and his clear-eyed vision of what can be achieved when residents work together. His strong and committed advocacy on behalf of the institutionalized aged and disabled was not confined to New York alone. He had a national impact as well, as a Board member of the National Citizens’ Coalition for Nursing Home Reform (NCCNHR), now the Consumer Voice, and the National Senior Citizens’ Law Center, now Justice in Aging. NCCNHR awarded Woody the Janet Tulloch Advocacy Memorial Award, which recognized him as a champion for the rights of long-term care residents.
There are many things for which we can remember Woody. For me, the strongest memory of him will be his presence. He was tall in stature, and not only in the physical sense. He carried himself with a grace and dignity that belied the post-polio syndrome he lived with for many years. In his easy and unassuming, but leonine way, he commanded respect. It was the same way when he spoke. He didn’t need volume to get people to listen to him, even when he was addressing a large crowd. He epitomized the dignity and respect due to all adult home and nursing home residents. We were lucky to have him as our leader for so long, and we will miss him.
Our mailing address is:
Coalition of Institutionalized Aged and Disabled
425 East 25th Street
New York, NY 10010