Resident Voices provides a platform to share the self-advocacy of residents. In these pieces, they share from their experiences. Some come from testimony on specific issues offered in regulatory hearing or lobbying activities. Other are written to educate the public on the needs and realities of those living in adult care facilities. The most recent voices come from the annual Speak Out in Albany, New York in 2023.
Adult Home Resident Testimony
from the Annual CIAD Speak Out Lobby Day
Wednesday March 8, 2023
The following statements reflect the lived experience of Adult Home Residents in NYC regarding the NYS DOH Equal Grant, Food Service, Case Management Services, and Autonomy and Choice
My name is Joel Young, and I am the Food Committee President at Brooklyn Boulevard ALP in East New York.
I was a food production manager at LICH and assistant director of food service at Wyckoff Heights and I worked for the City of New York as Assistant to the Deputy Commissioner in charge of five main cooking kitchens and satellites for men’s and women’s shelters in each borough.
I believe that most of our residents would do much better if we had fresh fruits and vegetables. Sometimes we get them frozen, but when they are served from cans the sodium levels are higher than they should for our population. Also, we are filled up with starches – rice, potatoes and noodles – as I’ve seen in many other places as well. Every utensil should be the proper size for the correct amount for that item, so piling starches on someone’s plate isn’t adhering to proper portion control, and rarely does the serving staff pay attention to that. With certain meals like beef stew and goulash, they simply pile it on. I’ve seen the residents getting more obese and less healthy.
We need more interaction with the dietician. How does our dietician, who’s comfortably ensconced in his home in Florida, know what’s really going on in our kitchen and dining room? Why, with all the money the administrations get, aren’t the people who hold these positions properly qualified? Even at the nursing home I was at, which was a dump, the food was better than it is at my home.
The kitchen staff isn’t properly trained. Why don’t the homes hire interns from culinary arts schools, where they will get experience and bring their knowledge, rather than people who are inexperienced and unqualified? Another concern is that the service staff in the dining room is not prepared for a choking incident, and we’ve recently had a few of those episodes, with nobody available to help.
My name is Vashti Hawkins, President of the Resident Council of Sanford Home for Adults. I have been a resident of Sanford Home for 32 years.
First, I want to say on behalf of the residents of Sanford Home we are very grateful to CIAD for making this day possible for us to have our voices heard by our elected officials and the DOH. Until CIAD and MFJ came to our home to help us, we didn’t know we had rights.
Today I want to talk about the food service in our home. I am sure all the residents represented here can relate to this story. As many of you know, Adult Home Residents live on a fixed income. Most of us get about $241 a month. That does not leave very much room for choices on what to buy from our Personal Needs Allowance. Unfortunately, most residents end up spending a good portion of their allowance on food every month because the food is not very good. Many residents go into debt with other residents because they run out of money buying food.
We were recently taken over by The W Group and hoped the food would get better, but the opposite has been true. The menu is very repetitive and often does not reflect what is actually served that day. We have smaller portions than we did before, and the food is not prepared well. Sadly, many people have gotten sick from the food with diarrhea. The other change that The W Group has made is to serve cold sandwiches for dinner. They say it is because we should have a lighter meal in the evening.
To respond to residents’ complaints, we did a food survey for all three meals to find out what residents like and don’t like to make recommendations to the administration. The Tool Kit from CIAD and the DOH says that the administrator in the home is supposed to work with the residents on making the food service better. We gave them our survey and sample menus from Senior Centers and from other websites on nutrition for older adults. We presented our report and felt we had a good conversation and that our recommendations were taken to heart. And for a couple of weeks, we saw some improvement. We actually had fresh cantaloupe in the summer a few times. But our hopes were dashed pretty quickly as things went back to the way they were. Also, residents prefer meals made by the assistant cook because the head cook’s meals don’t taste good. On those days food is left on the table or thrown away. We were told the head cook could not be fired because he is in a union.
We are not asking for lobster or filet minion. We simply want what most people eat at their home. A variety of fresh fruit and vegetables and salads with mixed greens or spinach for example not just iceberg lettuce which has no nutritional value. We want seasonal foods too and foods from other cultures like they have at the Senior Center like Asian or Mexican foods and Soul Food which is my favorite. Hot soup with dinner in the winter would be nice. No one should be hungry because the portions are too small. Residents pay for the food service from their Social Security income and expect to get food that taste good that is the best quality possible. We think this is even more possible now because all the homes just got a raise of $54 per person in the Social Security COLA increase. I know our room and board are subsidized but our meals should be just as good as the meals served at the Senior Center. We should not have to spend our PNA on food. We invite our representatives to stop by anytime to see what’s cooking!
My name is Nate Farley, President of the Resident Council at BACC.
I have been a resident for six years and have been involved with the RC for the past 4 years. I have also served as VP. This is my second trip to Albany for the Speak Out and it feels great to be back! Thanks to CIAD not giving up the fight!
Today I want to talk about Case Management (CM). As an Adult Home resident, I consider myself very fortunate. I have my faculties although I do have health issues. I am a very independent person and I have no problem advocating for myself. I take care of my own finances and I have my healthcare with an outside provider. I have a very active life with my family and often babysit my Grandson. However, this is not the case for the majority of Adult Home residents who don’t have friends and family to look out for them and who also have physical and mental disabilities that make their lives even more challenging. Another factor is the length of time people have been in these homes. Some people have been housed for decades in Adult Homes and have become institutionalized. That is why competent and caring CM is essential to residents’ health and wellbeing.
CM services at BACC are very inadequate and dysfunctional. First, the ratio of workers to residents makes no sense. In our facility we have over 200 residents and one CM. Unfortunately, this is the case in most Adult Homes. Another issue is turnover. CM’s come and go like the weather. Just when you get to know their name and the hours they work they leave.
And who could blame them? Being overwhelmed by the number of cases they have they hardly get to have lunch much less serve the residents efficiently. For example, I went to the CM to get paperwork filled out for housing that I cannot do on my own. Two months later I find out the CM is not a credentialed SW and is not qualified to give me this support. She could have told me that at the beginning and I could have made other arrangements. Now this problem will delay my housing process. Because we do not have enough workers, residents fall behind with appointments and unfortunately, they also get cut off of medical and financial benefits because they are delayed with getting their recertifications. This type of problem is serious and could be deadly because it directly impacts people’s health if their insurance is cut off. That means they could be missing medications or procedures they may need. There is also a backlog for residents getting ID, Access-A-Ride, and MTA Half Fare cards. And most devastating of all, some CM take financial advantage of residents as well.
There is a gentleman living at BACC who was the victim of theft of his Food Stamps (FS) by a CM. Due to the resident’s memory issues, this worker was holding the resident’s FS card and other vital documents. Unbeknownst to the resident, she was using his FS card to shop for her own family and spent over $1,000 on his card. Thankfully, she was let go but this story is not unique. These types of issues are very common in all Adult Homes.
Because this is a vulnerable population many residents are intimidated by staff and do not feel safe about complaining because they feel they will be retaliated against or may be threatened with being hospitalized or evicted. I am very grateful for our relationship with CIAD and MFJ because without them would not know our rights and have a way to advocate for ourselves to make sure the DOH knows what is going on. We need a CM system that truly takes care of residents needs and that is adequate to the task. One CM for 200 plus people is no CM at all and is not fair to the workers either. The rules need to be changed to require the right ratio of workers to residents. We hope the legislators and DOH will work with us to make that happen. We should be living our best lives free from worry and stress. With real CM we will be able to do that!
My name is Rafael Nathan. I am the President of the Resident Council at Belle Harbor Manor.
We have several case management issues at my home. This is mainly my story, but it holds true for everyone.
Our administrator was previously fired from Belle Harbor Manor as case manager because he was abusing the residents and he’s back as the administrator now and doing case management as well, and still abusing residents.
He has had the housekeeping director, Belinda, throw away my medical equipment, my medicine and religious items when I’m not there, and I have a service dog and she threw out my dog food, dog bowls for food and water, and my food, all of which were still sealed and unopened, and ripped my phone out of the wall in retaliation for speaking with a person from the State Department of Health. I reported it to the front desk and maintenance man, both, and nobody seemed concerned or responded.
The administrator has never called me or seen me to meet with me when he was case manager; he has only shouted at me in the hallway and the dining room in front of over a hundred residents. At this time, I needed appointments set up, help with rides, paperwork for recertification, and so forth, and never got help with any of that. They don’t help people get the free cell phones that we’re eligible for. And when residents try to apply on their own, they don’t know how to get around the restriction on our being listed as a business address instead of as a residential address. We have to turn to CIAD to get help for phones instead. They don’t help people find housing; they refuse. I know of cases where people have been thrown together as roommates who were not a good fit, and had to raise a big fuss over a two month period before they could get separated. And I’ve been discriminated because I am in a wheelchair and have a service dog, so I’m not on the ground floor, which is dangerous because if there’s a fire, they shut down the elevators. Even though three other people who moved in after I did, they were put on the ground floor, and they actually moved people out to make room for them. They also moved people who are ambulatory down to the ground floor. I’m being discriminated against for having a service animal because the administrator decided that I can’t eat in the dining room with everybody else. I have to eat in my room. My roommate doesn’t like dogs, but he’s not mentally capable of complaining, so he too is being discriminated against. We had a person here who was deaf and dumb, and they never brought in anybody to work as an interpreter for him, and he had complaints about bedbugs and an air conditioner that did not work for a whole summer, and they didn’t put in a fire alarm with a blinking light in his room.
My name is Danny Vargas Senior, Vice President of the Resident Council of Sanford Home for Adults in Flushing Queens. I have been a resident of Sanford Home for a little more than 2 years. So, I am newcomer compared to many of the residents represented here but no less impacted by my experience living in an Adult Home. I also want to echo our Resident Council President Ms. Vashti Hawkins’ words. It is great to be here. I am glad to be a part of the CIAD Speak Out Lobby Day and I am proud to represent the residents of Sanford. And from my point of view, without CIAD and MFJ we would be having a very different experience.
Today I want to talk about the Equal Grant and the experience we have had at Sanford. I remember when I joined the resident council and became Vice President, Ms. Vashti as I call her told me about the Equal Grant and what it meant to her and the residents of Sanford. She told me that before CIAD came to help residents in 2018 they had never received a Clothing Allowance or Gift card to spend on the items they chose like the winter boots, pants, and dress shirt I bought for myself in January.
Compared to what the program was when it first started in 1996, it was called QUIP back then, the DOH has made some very important changes to help residents get the most out of this fund to upgrade the facilities and help us have a bit of breathing room in our budget so that our quality of life overall is improved. However, we continue to struggle with the administration over these funds in making sure that the residents are respected in the process and that the administrators act in good faith and keep their word to residents. Since the new rules from DOH came out last year, residents can now weigh in on what the entire EQUAL Grant will be spent on. That means residents decide what they will do with their half of the grant called the Local Assistance budget and they can now help decide how the other half of the grant called the Capital Improvement budget will be spent to upgrade the facility.
Two years ago, the first time I worked with Ms. Vashti to negotiate on the grant with management they were not acting in good faith. Residents had voted to use their 50% on the Clothing Allowance or Gift Card. The administrator told us in this meeting that the DOH would not allow us to just use the money for a gift card and that we had to chose something else to spend the money on. But this is not true, and we stood our ground because we knew our rights.
Next in the negotiations they told us we had to accept American Express gift cards, or we would not get the grant at all. The American Express card is hard to use at local stores because they do not accept them. That is why we asked for a VISA Vanilla Cards. Residents did not want to accept this arrangement and they signed a petition that we sent to the DOH to appeal this decision by the administrator.
Thankfully, the DOH recognized this was not a fair deal for the residents and we had a second chance to apply for the grant. We also had to be very careful on what to chose because some of the items the administrator wanted us to agree to purchase were items, they should provide themselves such as repairs for the elevator. After this intervention by DOH, residents got the VISA Vanilla gift cards they asked for. The next time we had negotiations for the grant the process went better but we waited to receive our gift cards until the Spring of 2021 before they were given out.
Last year for the 2022-2023 grant the administration lied to the Resident Council about when they received the money for the grant. The W Group received the grant for Sanford Home on October 22nd. Each time we met with the administrator after October we were told they had not received the money and did not know when they would get it. They also told us we would not get the gift cards till January. We were very suspicious about this delay because we knew of other homes that had received their grant.
At that time, Sen. Toby Ann Stavisky was representing our home and we had established a very good relationship with her and her staff. We reached out to David Troise Sen. Stavisky’s Deputy Chief of Staff to find out what was going on. The next day he got back to us with the receipt of the invoice paid to Sanford for the $46,777 they received. After we confronted the administrator, she denied it at first until we reached out again to Mr. Troise for support. After he sent her the same email under his name, she then admitted they received the money. Residents finally got their gift cards on January 10th. And the company bought American Express gift cards, the exact opposite of what residents asked for.
This kind of behavior like not being honest or making excuses to not fulfill our obligations in life would not be acceptable for any of us. But this type of behavior and bad faith towards Adult Home Residents is all too common. Residents at Sanford missed out on the entire holiday season from Thanksgiving to New Years! We did not have the money we were promised to celebrate with our friends and families like they did and that is not fair or respectful. This kind of behavior must stop. Residents want the legislature to continue to fund the EQUAL Grant and want the DOH to make rules, so the program serves us better in the future.
My name is Deborah Hunter, I am a CIAD Peer Advocate and a former Adult Home Resident.
In 2015 I was a resident at Wavecrest Home for Adults in Far Rockaway. Life at Wavecrest was very challenging and very sad. Because of an illness, my entire life had been turned upside down and now I was dependent upon the whims of administrators and staff for everything. Then I met Ms. JK Canepa the Organizer from CIAD, and she gave me hope that my life could be better. She helped me to understand my rights and how to speak up. With her encouragement, I became a Peer Advocate for CIAD in 2018.
One of my assignments is to work with and advocate for the residents of New Haven Home for Adults which is practically in my backyard! Because I have lived experience, I have an acute understanding of what residents go through. The struggle I had to be seen as a viable human being with rights is sadly the same battle residents have to this day. These are forever homes for many people and should be places of wellness not warehousing. I’m going to say it again, Adult Care Facilities should be places of wellness not warehousing! In my opinion, the Equal Grant is a major part of that wellness. It gives residents a sense of self-worth, dignity, and autonomy. Heck, it just feels good to able to spend your money on things you want or need except for tobacco, alcohol, and firearms of course because those are the DOH rules.
As you may know, The W Group is the largest private for-profit owner of Adult Care Facilities in the state and New Haven Manor is one of their homes. The EQUAL Grant process has been extremely difficult at New Haven and the behavior of the administrator there has been totally unacceptable. Over a two-year grant period from 2021-2022 and then 2022-2023, residents have had to contend with outright lies, deception and coercion on the part of the administrator.
in 2021-2022 the Resident Council Officers at the time were told that if they didn’t accept AMEX Cards there would be no grant at all. I worked with the resident council on a petition to the DOH that reversed this action by administrators. But in the months long process of waiting for this decision, the administrator’s harassment of the RC leaders and then them having to deal with anxious and angry residents took its toll. I would call to check in with the Pres. and VP and they would not return my calls and they refused to hold RC meetings during this time of waiting. Months later when the Equal Grant finally came, the RC President and VP both resigned and told me they quit because they couldn’t take the pressure. Living under pressure and negotiating in good faith for the Equal Grant? Those two things should not co-exist! Although residents got their $75 gift card, the original ask was for $100 and residents were very discouraged that the process took so long.
Before the next grant application came out, I had to begin the very hard process of helping to rebuild their RC. At first there was a trickle of people at the monthly meetings and as time came near for the grant to come out more and more people became involved. We were able to get five people to Volunteer as Floor Captains to lead the negotiations for the grant and address other issues of concern on behalf of residents. But as the RC was gaining confidence again, the administrator started using tactics to divide and conquer their team.
For example, the administrator brought in Floor Captains individually not as a group to talk to them about the grant and suggested the things they should use the resident share of the money for such as a fish tank. He even told Floor Captains the state said they could not have a clothing allowance which of course is the opposite. And he brought a couple of Floor Captains in and showed one of them a blank Spending Plan and had him sign it. The other Floor Captain said he signed a document that had the clothing allowance and when he saw the document again the Clothing Allowance had been removed. This same administrator has also objected to and blocked the council from having meetings in the evening with residents to inform and advise them their rights and options. As of today, residents have still not received their gift cards and as you heard in other testimony the Equal Grant checks were sent out last October and November.
Residents of New Haven deserve better! They have acted in good faith and expect the same from administrators who demand respect from them! This grant is intended to enhance the quality of life in Adult Homes and instead in too many cases it has become a nightmare. We hope that legislators continue to fund this tool for good and that the DOH will sharpen its tools to make the process more transparent and accountable to residents.
AUTONOMY & CHOICE
Hi, my name is Diana Vilá, I have been a Peer Advocate with CIAD for the last 5 years. I am also a former resident of Belle Harbor Manor (BHM) where I served as a leader on the Resident Council.
I want to talk a bit about how I got here and why autonomy and independence for Adult Home Residents is critical to their wellbeing.
I worked at LaGuardia Community College for 20 years, working my way up from a Peer Counselor position to wearing 3 hats: I was working as an Academic and Career Counselor, a Program Coordinator training Peer Counselors, & an Adjunct Professor. Then life happened, I was laid off and lost my apartment and fell into a very serious depression. After a long hospitalization I ended up at Belle Harbor Manor (BHM) where I lived for 12 years. I was the Resident Council’s Vice President & President for the last 4 years until I finally moved out into the community.
When I moved into BHM, I was worn down and majorly depressed. I signed documents I could not read, and I did not know I signed my financial rights away. I have known many residents over the years who have experienced the same thing that I did. That is why working as a Peer Advocate is so important to me.
For many years BHM cheated me out of my SSD (Social Security Disability) money and I fought hard to get it back. It was not easy, the home put up a lot of resistance. It took months, a lot of patience, and resilience.
Because of support from JK Canepa from CIAD, I learned that even though I was not my own Representative Payee, I was still entitled to all my SSD money minus rent (not just my Personal Needs Allowance). I also learned that I was entitled to get a “Quarterly report” which is like a bank statement. With this transparency, BHM could no longer have the opportunity to cheat me.
I also learned about the rights that Adult Home Residents have in a workshop that CIAD and Mobilization for Justice (MFJ) gave called “Know Your Rights”. It was in this workshop that they gave us a booklet that contains the “Adult Home Residents Bill of Rights”. Through this workshop I learned that residents have the right to autonomy, the right to make choices that are best for them. Armed with this knowledge, I began to take my life back one step at a time.
As I got my finances in order, I worked on my medical care. I saw my own doctors and specialists outside the home. Although the home’s Case Manager is supposed to help residents make outside appointments, I made my own choice for providers outside the home this way I could see who I wanted. I was also able to get a Nutritionist to help me choose healthy food options for my health conditions. I also got authorization from my doctor for self-medication and did not have to wait in a long que every morning and evening with other residents to take my meds. Being empowered to make my own health care decisions, I took another step and budgeted my allowance and bought a fridge. Then I was able to get the foods I liked including the fresh fruits and vegetables I was not getting at the home.
Finally, I became a leader in my home helping other residents to do the same. I helped change the food for the better by creating a food survey for all residents to have a voice about the quality of the food which is a right. We were able to improve the food quality and get more fresh fruits and vegetables on the menu for everyone to enjoy.
When you live in a congregate care facility, privacy is a premium commodity. Even in the home, you have the Right to Privacy. I fought for our right to ensure who could enter our rooms and when. Aids could no longer just barge into our rooms. They had to knock and wait for a response before entering. No staff or resident could enter without permission.
Living in an Adult Home can be a very debilitating experience. Residents are too often treated like children and with little to no respect for their agency as adults and in too many cases are taken advantage of like I was. When I realized that I had rights and that I could make decisions that were best for me I was empowered to change my life for the better. Residents have the right to have help exploring all their options and rights. This help may not come from the home’s Case Manager. It may be your Care Coordinator or your own Social Worker you get to select. If they can’t help, call us on the CIAD Support Line. Get info, ask questions, get support, or just talk. Learn from our experience. Grab a flyer you or someone you know may need that number one day, soon.
Today I am using my experience and skills to teach the CIAD Independence Skills Training. We hope that legislators and DOH will help with more opportunities for residents to “Get their life back” by making sure they understand and know their rights and making by making sure home operators and administrators are more accountable to residents so that they the live healthy, happy, and productive lives they deserve.
My name is Ruberto Rodriguez, I am a Peer Advocate for CIAD, and I am a former resident of Queens Adult Care Center and Belle Harbor Manor where I served as a leader on the Resident Council in both homes.
Today I want to talk about Autonomy and Independence for Adult Home Residents. When I was living at QACC, I became Vice President of the Resident Council. There was not very much going on at QACC for recreation. Residents there were very bored, and they wanted to know where they could go to have fun. I was bored too, and I wanted to find an outreach therapy program. I was looking for a PROS program to help me with my depression. PROS stands for Personalized Recovery Oriented Services.
The Case Manager kept denying me for a year. She would say “I’ll look into it”. While I was in the office with the computer right there, she could have simply looked it up for me. After the first year living there, I was finally able to see the CM to help me find the program. However, she also told me in this same meeting that I could only see her once a month and that was very upsetting.
When I moved to QACC, I was told that the CM was the person responsible for helping residents with their health care, finances, and social needs. However, my experience that first year with the CM proved that unfortunately, this help would not be available. My interaction with staff and administrators was frustrating as well. They did not treat me or other residents as adults but looked at us as a burden and not as partners in caring for ourselves. Despite my disability, I am a very independent person and realized that I had to take action myself to improve the quality of my life.
I wanted to have my own personal doctor and I had to arrange that by myself. Another goal I had was to apply for a motorized chair. My experience was that the doctors they provided at the home would say that I was not disabled enough so I knew that an outside doctor would give me more assistance in helping me to accomplish my goal in getting the motorized wheelchair. A lot of the residents want to have their own doctor but are discouraged from doing so and the CM does not help them to accomplish this.
I also requested to be able to self-medicate especially because in my first year living at QACC, I was given the wrong medicine. I was struggling with the CM for support with issues that are a normal part of her duties, but she didn’t have the time to help me with anything because QACC has 300 residents. This is a very serious issue and a disservice to residents who expect to get the help they need. I was able to get help for myself, but many residents need more assistance and the current system of one CM per home makes this impossible. As a Peer Advocate for CIAD I work with the Resident Council to educate people about their rights and options for services. Thanks to CIAD, we now have an Independence Living Skills workshop where residents can learn more about how to advocate for themselves.
Information is powerful. Because of my life experience before I was an Adult Home resident, I knew how to get help for myself but many people because of bad experiences in the home don’t have this same level of confidence or know their rights. We want the legislators and DOH to make sure residents know their rights and get the respect they deserve.
For more information contact us at www.ciadny.org