Abilities Not Disabilities

I continue to receive comments from readers from around the United States that have contacted their local agencies and have been told that they are not currently able to fund requests to build wheelchair ramps. I have contacted the national Habitat for Humanity organization to see if they could provide some guidance or suggestions, but I have yet to get a response. Locally, in Salem County New Jersey, they have experienced times when their funds for the ramp program have been depleted.

My colleagues that needed ramps, or helped others get ramps, have told me that it is important that newly disabled patients need to identify the professionals working with them as soon as they enter rehabilitation or before they are released from a hospital or rehabilitation center. It is important to ask questions about how you will be able to access your apartment or house and your bathroom. Often there is a team of professionals working with the patient at the hospital and at the rehabilitation center and they create a plan to address the various needs and goals for each patient. It is very important to ask about your medical and rehabilitation plan and secure a commitment that access to your home and bathroom is included in these plans.

Do not assume that this will automatically happen. Advocate for your family member or yourself before the discharge takes place. Once you are discharged, the burden of solving these problems become a lot more difficult to solve. Money is always an issue, but even more so during a pandemic. It would be great to identify a funding source for building ramps and remodeling homes to make them accessible. If anyone has any ideas or specific sources of money, please contact me.

My nephew, who has been homeless for more than two years on the streets of Camden NJ, has often tried to be admitted to Cooper Hospital to receive care for a number of medical conditions and to try and get off of the streets when it is cold. As someone that also has a drug addiction, he also attempts to get drugs for pain during these attempts. As with my friend Ray’s suggestion to contact the social worker that is available in the hospital and nursing homes to locate someone to install a ramp, social workers also help patients with drug addictions locate programs to assist them with their issues.

During one of his extended stays in the hospital, services were provided to meet his various needs and he was also signed up for Supplemental Social Security benefits. As a current patient, he only qualified for $50.00 a month to cover incidental needs. When he was released, he continued to receive $50.00 a month. After more than two years at this modest level, he was readmitted to Cooper Hospital and was placed in a program to deal with his addiction and other medical conditions which also included temporary housing at a local motel, a phone with minutes and a case manager and team of professionals to work with him. During this time, one member of his team reviewed his status and contacted Social Security because he believed that he was receiving the wrong amount.

It was determined that he was actually entitled to significantly more than $50.00 a month and that he would benefit from having a representative payee to handle a retroactive payment that would be in the thousands of dollars. Aaron was already using my address in Monmouth County to forward his mail and I volunteered to be his representative payee. During this time I was also working with Aaron to complete the forms sent to me and forward them to the local Social Security office. Because the offices were not actually open, a telephone interview was scheduled. We held the meeting in his case manager’s office and soon realized that they were not going to just send him the money.

After almost an hour on the phone with the claim’s investigator, we were able to submit an application for me to be his representative payee, but we were not able to get his claim appeal settled. He was still listed as a patient in the hospital, his last actual address was his mother’s apartment in Gloucester county, his mail was forwarded to me in Monmouth county and they wanted a detailed explanation of all hospital admissions, discharges and the locations that he had lived in since the initial claim was submitted. We were able to schedule a phone interview in January to provide this information. As long as Aaron completes all of the requirements for his program, he will keep his current temporary housing at the motel and his team will continue to provide services including the possibility of an apartment.

The important thing to keep in mind is that this is not an easy or quick process and the homeless are not usually equipped to figure all this out. The hardest part is to keep Aaron focused of controlling what he can control and remain as calm as he can. With all of the disappointments and bad decision making, keeping him calm and focused on what can be is a major task. The pandemic makes it even more difficult because everything is virtual and has an extended time frame. To make matters even worse, they have stopped his $50.00 benefit until they can confirm all of the information that they are questioning. What can the homeless do when they don’t have the help and resources that they need to keep up with the required correspondence and basic needs of food, shelter and clothing?

My friend Ray has been in a wheel chair for thirty years so I asked him what is the best way to get a ramp for someone that has recently become disabled.

As I mentioned in a previous post, Habitat for Humanity in Salem County does a great job in providing ramps, but money to build the ramps is always an issue. As readers have contacted me from outside of Salem County, I have found that not every area is as fortunate as Salem County New Jersey. The readers that have contacted me are absolutely devastated that money is not available or they can’t navigate the local procedures. I asked Ray for his advice.

He has been involved with the ramp program in Salem County and thinks that it is a great program, but suggest that the individual or the family member in charge start with the social worker or nurse navigator at the rehabilitation center or hospital. They are working with a wide range of professionals and service providers. He also mention that there is often a team of professionals that work with each patient in long term care. Try this and get back to me with how this worked.

Recently, I have been receiving email responses from my blog and decided to post this one. Like the other emails that I have received, it is from a family that is in need of assistance and the agencies in their area are not able to assist in providing ramps to their homes and they detail the difficulties that this creates as they try to care for their loved ones. This email is from Florida and I am not familiar with services available in that state or maybe that county. I am posting this on Facebook because I have Facebook friends in Florida. Any thoughts on where this person should go for help in Florida? Her story is listed below:

I’ am not sure how to go about this, but I am writing in reference to my son’s father who was tragically injured in a motorcycle wreck that was not his fault. The person who hit him did a rolling stop and hit him head on in the lane he was riding his motorcycle. He was in ICU for almost 3 and a half months, his right leg was amputated all the way up to his hip, he had a crushed pelvic bone, an heart attack, brain bleed and several other injuries that include 7 broken vertebrae. He was sent to rehab from the hospital.

The man who hit him had minimum insurance and every lawyer has turned us down. I live in my parent’s house (who have passed away) and I can’t make the payments. We are losing this house through foreclosure. He is my ex husband and the best friend you could possibly find. He has a home which is on stilts and I’ve tried everything possible (go fund me page, elder options and state assistance) to have a ramp or chair lift put in before we go homeless due to another person’s driving neglect.. We are trying to get prosthetic care started, but without a ramp we can’t get stretcher transport to take us to doctor’s appointments. We are at a loss and I am literally begging to find help.

He hasn’t been in the shower in 8 months because we can’t get him into the bathroom. I’ve had nurses, therapists and case workers giving us phone numbers to call, but we are getting turned away or no one answers. I don’t know where to turn for help. This has impacted all of our lives, and if we get foreclosed on here, we will have no where to go because we have no way for him to get in his home. We had a life till this man rolled through a stop sign and took what little we had to survive. l don’t think we can get help because we are poor. No human should have to just lay in a bed and exist with no help.  

I have had to quit my job to take care of Anthony who requires 24 hour care. Three months prior to accident, Anthony was able to buy his dream home which is on stilts and we can’t take him to his own house. I been trying to get help anywhere I can and I am writing to you as my last hope for resources to help him. It has made us so depressed and hope you can direct us some source of help. I’ am putting this out there in a very desperate cry for help I want to thank you for taking time to read this. We don’t look to get a free ride , we are just poor.

Aaron’s SSI benefits of $50.00 a month were started in October 2017 as a result of the good intentions of a case worker while he was in the hospital for an extended stay. As a patient in an extended stay, the $50.00 would cover his incidental costs, but once he was out of the hospital, he was actually eligible for an increase in those benefits to assist him with housing and food expenses. Since that stay in the hospital and through August 2020, he has been admitted to the hospital an additional 18 times. When he was released, he was released to the streets of Camden because he didn’t have anywhere else to go.

Yesterday, Aaron and I had a phone meeting with Social Security to discuss the stoppage of his benefit and to complete an application for me to become his Representative Payee: someone that will receive his money, account for its distribution and provide the money to him or to pay his bills. They did take my application to be his Representative Payee, explain what information I need to document and set another phone conference during January. I need to obtain information concerning any housing cost that were paid by him since October 2017 which is $0.00 because he had no money and document any place that he stayed during that almost three year period. Recently, he has been provided with a renewable two week stay in a motel in Cherry Hill as long as he makes his appointments and abides by the programs requirements.

The rest of the time he lived on the streets of Camden wherever he could find a safe place, parks, abandoned buildings and even a port a potty. I am not sure that there is any way to actually document all of that and I hope they will accept homeless on the streets of Camden as an answer. Because he didn’t have an actual address or a phone, his benefits are actually being cut off for failure to respond to Social Security’s requests for a timely reporting of changes in his living status. The real world is not set up to deal with the reality of being homeless. What can the homeless actually do to meet the structured needs and requirements of an orderly system of expectations?

Like a lot of homeless people and people that are drug dependent, Aaron is not very good at dealing with the frustrations of dealing with the workings of government agencies and their time lines. If you add in his bi-polar issues and figure that he might not be taking his medications, this problem gets a lot more complex and frustrating for him. The people and family members that are involved in an uncertain journey because he does not always contact us or follow through with his commitments. With that said, he does seem to be trying to follow through and move forward. He is adamant that he didn’t sell his phone and just lost it.

I have been trying to help him get another phone through his case manager, but this is a very slow process. I am going to try to get him a phone because it will really help with his progress. I found out that he is not attending all of his meetings because the ride that they send to pick him up will pull in, beep their horn, wait a few minutes and will leave if he doesn’t come out of his room. Everyone is used to leaving a message on the client’s phone about up coming meetings and a quick call to remind them. With no phone, that system is not working. I stop by his motel room (a 45 minute drive) to bring him food, check on him bring him his mail and et cetera, but he isn’t there very often. I leave a message on his door and he has found someone that will let him make a call, but it usually results in missed opportunities.

Trying to think like a homeless person thinks is really difficult for someone that isn’t homeless. I take so many things for granted and they don’t match up with Aaron’s life style. He has an email address which was created with the help of his case manager when they set up the phone that he was given. He doesn’t have the phone and doesn’t know how to use an email. He doesn’t know how to use the internet. Once again, I need to get him a phone and help him learn how to use the internet and an email address.

I also have been helping him with his Social Security account which gives him $50 a month loaded on a credit card. They just sent him a letter( care of my Monmouth County address) to indicate that they are reviewing his case and planning to suspend his payments because he hasn’t responded to their requests for information. His initial claim was processed with his mother’s address in Gloucester County, his mail is sent to my address in Monmouth County and he currently lives in temporary housing in Camden County. No wonder they want to verify his information. I have a phone meeting scheduled through my phone number on December 8th at his case manager’s office in Camden. I also managed to get him to sign all of the forms and I sent them to the Monmouth County office and I hope they get everything.

I am not his Representative Payee so I can’t officially respond for him and I can’t help him set up an on line account because only the individual is allowed to access this information on line. One step at a time and a positive attitude will move us forward. On the positive side, I do believe he is doing everything possible to make this work, Unfortunately, he just doesn’t have all of the skills and technology necessary to move this forward on his own, but he is on a lot of different prayer lists and I am committed to help him.

I have been writing about helping my nephew by providing a mailing address so I can monitor his status (medical and SSDI), making phone calls, attending meetings with him and his counselors and trying to keep communications timely and accurate. Recently, one of his counselors determined that he was receiving significantly less SSDI payments than he is qualified to receive and has been trying to assist him. As a result, forms have arrived at my mailing address c/o me and I have taken these forms to Aaron, helped him complete them and send them to the Social Security Administration.

The most recent form indicated that they don’t have accurate information about his status and he has 10 days to contact them and provide the information or his current benefits will be stopped. I do not have any legal status to act in his behalf, but I am persistent and his story is compelling enough to at least have the person on the phone listen and give me general advice. After a lot of calls, I have determined that there are two offices that are involved: Monmouth County because his mail is forwarded to me and Gloucester County because that was his last known official address. Essentially, they are going to stop his payment of $50 a month until they can determine if there is some kind of fraud and clarify all information.

Everything needs to be completed by mail because the offices are closed due to Covid and I can’t help him set up an on-line account because it is not legal to share information about your account with anyone. He can’t do this himself because he doesn’t know how to use a computer, doesn’t have a phone or a computer, doesn’t have an email address and doesn’t have an actual address. I am happy that he is drug free for several months and has help from his counselors, but I keep thinking about all the homeless people that are in a lesser position and do not have someone to make calls, follow up on information and can provide food and support.

Like a lot of homeless people and people that are drug dependent, Aaron is not very good at dealing with the frustrations of dealing with the workings of government agencies and their time lines. If you add in his bi-polar issues and figure that he might not be taking his medications, this problem gets a lot more complex and frustrating for him. The people and family members that are involved in an uncertain journey because he does not always

I recently had two comments from readers in Oregon and Illinois that indicated that they have been trying unsuccessfully to get a ramp for a loved one in their area. Unfortunately, it again points out that services for the disabled are not available in all areas. In our little Salem County we do have this program, but budget issues prevent all requests from becoming a reality. Both readers that contacted me are desperate because of the needs that their loved ones have, but politicians don’t always support this need through their budgets and non profits can’t always raise the funds to handle the needs.

Program Description reposted from August 2019:

“Habitat for Safe Seniors Free Ramp” Program can provide free handicapped ramps for disabled seniors (especially for low income and fixed income seniors), but due to individual differences in programs throughout our country, these programs may not be funded or available. Where they are available, the wheelchair ramps are often built with the help of volunteers.

Where available and before a wheelchair ramp can be built, a site visit is made by the “Habitat for Safe Seniors Free Ramp” Program to assess the senior’s home environment and detailed need for injury and fall prevention. The “Habitat for Safe Seniors Free Ramp” Program also estimates the financial cost of material, labor, and equipment required to install the free ramp. 

After the free wheelchair ramp is installed it allows seniors to live more independently in their own home and can prevent accidents and falls thereby helping elderly to maintain a higher quality of life for a longer period of time. Ramps are crucial for elderly home safety so that in the case of emergency elderly are able to exit the home quickly and safely. Please contact your local government agencies to determine if they have this program in your area. If they don’t, try to gather support in your community to budget the necessary money to make this a reality.

To help support these efforts to raise awareness and funds in your area, some of the reported benefits of free ramps installed for the elderly are listed below : 

-Seniors can take more trips to get medical care such as doctor’s visits and dialysis treatments
-Seniors will have increased mobility and more choice in daily activities
-Seniors can reconnect with their friends and communities
-Seniors can access social service programs
-Seniors are supported to age in place and stay in their own communities rather than having to make a decision of moving into costly assisted living facilities
-Ramps are crucial in the case of emergencies so that elderly and emergency  personnel are able to enter and exit the home quickly and safely. The “Habitat for Safe Seniors Free Ramp” Program falls under the “Home Safety and Repair” Program and may provide:

Free home repair assistance for seniors such as adding a step, fixing a handrail, stabilizing loose banisters, and replacing rotted landings, plumbing repairs and more.

Where available and where funded, the “Habitat for Safe Seniors” organization also hosts the following elderly nutrition programs:

–Elderly Nutrition and Food Delivery Program which delivers perishable and non-perishable food to seniors through volunteer deliveries.
-Emergency Food Pantry which provides food for seniors in need.
source:habitatforsafeseniors.com

MORE WHEELCHAIR RAMP AND HOME MODIFICIATION PROGRAMS (where available and where funded):

Habitat for Humanity Critical Home Repair Program – Across the USA. Habitat for Humanity provides subsidized critical home repairs and modifications for seniors to allow them to age in place and for those with disability or low income circumstances. A “Brush with Kindness” Program for exterior home beautification and the “Repair Corps for Veterans” Program is also featured.

Weatherization Assistance Program (WAP) – Across the USA. Federal program providing weatherization assistance to homeowners with the result of lower energy bills and energy use. US Department of Energy.

How to Build Wheelchair Ramps for Homes Program – Available online.
A manual, DVD video and specifications on how to design and build wheelchair ramps for senior and the handicapped.

Rebuilding Together Safe at Home Modification and Repair Program – Across the USA.Provides critical free home repairs, home modifications and home improvements for low-income seniors, adults and family homeowners.

Certified Aging in Place Specialist Program – Across the USA. Seniors who plan to stay in their homes as they age can call on a team of trusted aging in place specialists in construction, architecture, and interior design who are available to provide seniors with needed aging-in-place home modifications such as ramps to ensure ease of mobility and elderly home safety.

National Directory of Home Modification Repair Resources Program – Across the USA. A directory put together by the National Resource Center on Supportive Housing and Home Modification of hundreds of home modification contractors and assistance with repair resources.

ElderProofHome.com Gift Card Program – Available online. Gift card for seniors to make home repairs and modifications that they may need, but may be hesitant to pay for by themselves. Home modification and repair safety improvements may be made such as: bathroom bars, safety rails, wheelchair ramps, threshold ramps, walkers, motion sensors, security locks, powered chairs, lift Seats, motion sensor stair lights and much more.

I haven’t been able to contact my nephew for about a week. His phone goes to voicemail and my calls and texts haven’t been returned. Is this the return to the problems that he has been working so hard to overcome? I e-mailed his case worker and called her. I finally got in touch with her only to find that he has now been assigned a new case worker. I also found out that he lost his phone. I wondered if he really lost his phone of did he trade it for drugs? He has done that before.

Trying to stay positive when things flash back to behaviors that have happened before, and have not turned out in a positive direction, is very difficult. Everyone in the family has had this experience with Aaron and have been disappointed that he is falling back into his drug use. I don’t know that is what is happening, but after a while, it is the first thought that comes to my mind. It is important to realize that the only way to really know what is happening is to drive to him and determine what is actually happening.

I drove to the motel that his counselor has provided and met with Aaron. Although I have been there before, and I have brought him food, I am just starting to realize that he can only make food that is already prepared or that uses milk or hot water. Cereal works and instant oatmeal works, but “mac and cheese” doesn’t really work because the hot water from the sink isn’t hot enough to melt the cheese. As we talked, he asked me if I could buy him a coffee maker so that he would have water that is hot enough to give him more food choices. I asked him about a microwave, but he wasn’t sure that he is allowed to have a microwave in the room. The more I think about his food choices, the more I realize just how bad his choices are and I am not sure exactly what to do.

I discussed the SSDI forms that I received for him and had him sign the forms. He gets $50.00 a month on a credit card, but his counselor found out that he was supposed to get a lot more, but the initial application was filed while he was in the hospital and not updated when he was out of the hospital and homeless in Camden. The lower amount was for individuals that are long term hospital patients and qualify for an amount that would cover incidental expenses. He doesn’t have any valid sources of identification and every time I think he is making progress, I realize that the things I take for granted in my life, and how I get things done, are not available to him at this time.

I now have a list of things that need to be done and things that need to be purchased for him, but I need to schedule a meeting with him and his counselor to verify what is being done and what I should do. When I think of my children, I realize how fortunate I am. They were able to figure out what needed to be done or their mother and I directed them to get those things completed. It seemed so relatively easy, but that is not the life that he had. In reality, his mother was having problems just keeping her life together and she had my mother to oversee what was going on. I just didn’t realize how much my mother was keeping everything together for both of them. When she died, things started to unravel, but I had no idea.

When my sister died two years ago, the last safety net disappeared and Aaron was now homeless. How is it that his family has so little involvement with him? The easiest answer is that he doesn’t contact us and we didn’t have a way to get in touch with him. There were times I found him by driving around Camden and made arrangements to meet him and get him clothes and food. People that have had family members involved with drugs cautioned us to not enable him and let him get to the point that he is ready for help. What I keep wondering is if this really was the right course of action. But now, I need to focus on that fact that he is actually making progress and try to help him.

There have been so many times that my nephew has told family members what they want to hear only to realize that it is what drug addicts do to get what they want. I am trying to be open minded and believe that this time it is different and he is on his way to recovery and a more meaningful life. There are many signs that this is true, but there are so many obstacles that are still there.

He is living in an older motel in Cherry Hill that seems to be a go to short term housing solution for our Social Services system. It isn’t an efficiency, so there are no stoves or microwaves. That means that his hot meals are meals that can be created by the hot water in his room. Getting food is also a problem because he has mobility problems and there aren’t any stores that he can just walk to and buy groceries. There is a WAWA and a McDonalds in his walking range, but that isn’t an answer to his food issues. I keep up with him through the phone they provided to him and that is a great improvement. However, he still only reaches out when he wants something.

When there is an extended time between calls and texts, I have tendency to expect the worse, but I am trying to be more positive and believe he is becoming more self sufficient. I also know that he is bipolar and sometimes he does things that are impulsive and not in his best interest. When my wife and I talked about his situation, we realized that he doesn’t seem to have any friends and he has very distant relationship with family members. That by itself seems to be a very difficult thing to know and navigate.

The calls and e-mails from his case manager have dried up and I guess I need to start contacting them again to see what is happening from their point of view. Has he met their goals and is he now in the next stage where he is expected to be more independent? Has he moved on to another case manager? What is the plan other than just living at the motel? They indicated that he was eligible for housing. Is the motel the housing that they promised or is there actually a more independent housing alternative that will become available. I am not sure so I need to reach out and see how he is doing officially.