Abilities Not Disabilities

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.

A fellow teacher gave me a book to read that was written to the families of drug addicts. It stressed how enabling the drug addict didn’t help, and in fact, just continued the cycle. It seemed as though the book and my fellow teacher were telling me to let my nephew hit bottom and wait until he really asked for help. It was tough love and it seemed very cold and it was difficult to accept, but I tried it.

It was almost winter in 2019 and I got a call from my nephew asking me to come see him at the hospital. He was now HIV Positive and suffering from a number of medical conditions. He was scared and was telling me he didn’t want to die on the streets of Camden. There was a very positive social worker that was helping him and she asked me if I would come to a meeting with his team. Because he was HIV Positive, there were some programs that were available to him and a chance for housing for him. It seemed like things were finally gong in the right direction.

He was given temporary housing at a motel in Cherry Hill and he had a specific plan that he had to follow. Obviously, staying drug free was part of that plan, but I really didn’t know all of the requirements. My cousin, my wife and I brought him food and other things he needed to start making it on his own. He seemed positive and focused. He was saying all of the right things and we were all hopeful. Unfortunately, he violated his plan, was told to vacate the motel room and he was once more homeless on the streets of Camden and back on drugs. At this point we all felt that it was hopeless and expected to receive a call or some notice that he was found dead somewhere and we were being notified as next of kin.

Fast forward to August of this year. I tried to contact him with limited success during the winter and spring of 2020. He appeared on Facebook as a friend request during the beginning of summer and I received a text from him. He later called me looking for money. I was rather short with him when he called at 8 pm and asked me to bring him money to Camden. About a week later I felt bad about that last conversation and tried to call him. Someone answered and told me they didn’t know anyone named Aaron. This is how things work when you try to keep track of an homeless person on drugs. I could have driven to Camden and look for him, but that hardly ever worked.

Aaron was once again somewhere in Camden, homeless and I had no way to contact him. Shortly after that, I got a call from him and he was in the hospital with another medical problem. However, this was different. He sounded different and it was difficult to believe it was him because he seemed so focused. He gave me the names of his client navigator and a representative of another agency that was helping him increase his SSI benefit. He asked me if I could come to Camden and meet with his support team. Then he asked me a question that I never expected: “Uncle Frank, Karl believes I will be getting a retro check and I wanted to know if you would manage it for me? If I get the money, I would probably buy drugs and end up killing myself.”

Surprised and not sure if this was even possible, I followed up with Karl and he verified that it was quite possible. A meeting was set with his support team and I went to Camden to attend the meeting.

That is a question that my family has debated for the last 30 years. My nephew has used drugs since he was a teenager and he is now 46 years old. The answer to this question depends on who you ask and when you ask the question. When he was a teenager and a young adult, my mother made a lot of excuses for him and explained how his unfortunate life circumstances caused the problem, She gave him money (but not to buy drugs), yelled at him, preached to him, prayed for him and helped him get into various rehab programs and didn’t hold him accountable when he stole from her.

My father was angry and hurt and tried to give him love and advice, but he pretty much let my mother handle what was done and said. My sister, his mother, also had a drug problem and had no influence on changing his behavior. She was too busy trying to hide her own addiction problems and worried about him stealing from her. My sister and my nephew both were enabled by my mother. She knew they both had a drug problem, but ultimately, she either gave them money or reluctantly accepted the fact that they were stealing from her.

Most of my family were brutally outspoken about his drug problem and wanted him out of their lives. They didn’t want him at their houses and were very suspicious about what he was doing whenever he was at a family event. I invited him to my family holiday party every year, but he didn’t come very often, When he did come, he didn’t fit in with the rest of the family and was basically just at the party. No one was mean to him, but no one really said much more than “Merry Christmas” or “do you want something to eat or drink.” He also got some presents. Mostly clothes because he didn’t have a job and could always use some clothes. No one gave him any money because we all knew that he would use the money to buy drugs.

As he got older, he spent time in prison and disappeared to Camden. He never did anything that was really bad, but he always had unpaid fines and the police were very familiar with him. Throughout all of the years that he was using drugs, he always had his grandmother to help him. When his bipolar episodes ,became too much of a problem, or he stole from her and his grandfather, they would tell him to leave and he would go to his mother’s house. He would do the same things at her house and she would call the police to have him removed. Sometimes he would be put in jail because of open warrants, but they didn’t seem to keep him very long and then he would disappear to Camden.

This ongoing cycle ended when my mother, his grandmother, died. There was no longer the protective net that paid the bills for my sister’s apartment and the money for food and other essentials. As my sister’s life spiraled out of control financially and her own health problems overwhelmed her, she lost her apartment and went to a medical rehabilitation center where she died. Now, there was no safety net and my nephew became one of the many homeless drug addicts on the streets of Camden.

Next time: Has he hit bottom and is he ready to get help?

I didn’t explain what Register Ready was in my last post so I need to take care of that. The Registry (a special needs registry) is used by first responders (Police, Fire, Sheriff Officers, Emergency Medical Services, Health Department Personnel, and if necessary, the Army National Guard) to assist in relocating our residents prior to an emergency situation. The Special Needs Registry is free, strictly confidential, and completely voluntary.

You are eligible if you have no place to go during an emergency and have a disability covered under the Americans With Disabilities Act or require additional assistance due to the following conditions:

1. History of stroke
2. Hearing, vision, or speech impaired
3. Frail elderly
4. Walking limitation
5. Severe breathing problem
6. Wheelchair, cane, or walker user
7. Heart problem
8. Mentally challenged

For more information or to get signed up in Salem County, call (856) 935-7510 Ext. 8304

Also, I wanted to remind everyone of the legal talks going on in September.

If you haven’t haven’t signed up for Register Ready, this is a great time to do so. It is also a great time to plan for your September activities. Although it can be difficult to plan things in these trying times, we need to still make plans and move on with our lives.

I delayed going out for a wonderful 46th anniversary celebration with my wife because of Covid concerns for two months. We went to DiPaolo’s patio in Penns Grove on Tuesday evening for a wonderful dinner. Great food, wonderful setting, great social distancing by DiPaolo’s staff and a time that Laurel and I were able to enjoy a wonderful evening. I followed this up with a golf outing with my friend from high school, Jim Ward, yesterday and we were able to wear our masks and have a great day on the course. We were even able to enjoy lunch at Blue Heron Pine’s outdoor deck.

Each of us needs to determine how comfortable we are with resuming our previous activities, but I would encourage everyone to at least think about the activities that we can be comfortable with. Enjoy and be careful.

I attached the Senior Scoop from the Salem County Office on Aging and Disabilities. Although there are a lot of virtual program options and drive through options, the senior scoot trips are still available with masks and social distancing. The Grab and go lunches are also listed for August. Things are different, the Office is still available to assist you. Call the office, go on their Facebook page or email them.

On Monday, July 26, 2020 the Americans with Disabilities Act of 1990 turns 30. This is a civil rights law that prohibits discrimination based on a disability. It affords similar protections against discrimination to Americans with disabilities as did the Civil Rights Act of 1964 which made discrimination based on race, religion, sex and national origin illegal. It also requires employers to provide reasonable accommodations to employees with disabilities as well as requirements for accessibility.

Having a law creates the framework to ensure that we have rights, but enforcement and actual practices are another thing. When I was on the board of Access Wilmington (the mayor of Wilmington Delaware’s committee on accessibility) 1988 – 2000, I was very excited when the ADA was passed. Then the reality became apparent: it was not funded. Our committee thought that it was going to be great that curb cuts would be installed and buildings would become accessible. Without the funding this didn’t happen quickly or without a great deal of resistance.

The city had not budgeted money for curb cuts, but the members of the committee went to the large employers in the city of Wilmington and influenced them to put in the curb cuts near their businesses and help fund other locations. Accessibility to buildings was another issue because it only covered new construction and renovations. Even new buildings with professional architects had difficulty getting it right. Our committee toured a high profile building before it opened to the public and it was outstanding. However, one of our members in a power wheelchair went to look at the “handicapped” stall and couldn’t get in and close the door. It was great if you had a manually operated chair, but not large enough for the larger power chairs.

I don’t think all discrimination or decisions that seem discriminatory are the result of willful actions. People know what they know and don’t know what they don’t know. The architect didn’t know about the size differences between the types of wheelchairs. The committee was also asked to review accessibility issue for First Night Wilmington. We found that the sites that were listed as accessible weren’t all accessible. When we talked to the owners and managers of these sites, they would tell us that they thought it was OK because it was only one or two steps. One of our members insisted we bring an extra manual chair on these inspections to allow the person in charge to try and navigate those steps. That is only one example of someone not aware of what it means to be physically disabled.

There are many different disabilities that affect people differently and it really is impossible for people to add value without direct knowledge of that disability. My suggestion is that we take the time to interact with individuals and try to see things from their perspective. I know we can’t fix everything that we encounter, but if we look, ask questions listen and remain open to the information we discover. maybe we can add value to someone else’s life. Happy 30th to the ADA.

The Salem County Office for the Disabled Advisory Board meets next Tuesday with a conference call. Ray Leight and I have been talking about how to create a virtual Disability Awareness Day if we can’t all meet in person. I discussed this with the Executive Director of Resources for independent Living and Lisa believes that they can create a video or U Tube presentation for the event. The idea will be on our OFD Advisory Board agenda, but who will be interested enough to try and make it work? The really positive thing about doing a virtual program is that it can be posted and people can see it more than once and can go to specific vendors and services to get the information they need.

We need to get a keynote speaker and decide if we can have the awards ceremony. It would be disappointing if we can’t select and celebrate a person and or an organization that are doing things that improve the lives of people with a disability. I am not sure how well this idea can be presented on a conference call. In person, you can make eye contact and read the body language of the rest of the group.

Even if we can make the case for a virtual program, it is going to be difficult to get things completed because people and organizations are still not functioning as they normally would. Organizations, products and services are just feeling their way as far as how open and available they are. On a personal note, my air conditioner (condenser) died after 28 years of service. The service tech came out and we determined it was time for a new unit. We had a plan, I paid 50% of the cost for the new equipment, but the distribution chain was empty, The equipment is not available due to production and transportation issues related to Covid. The company I am using is trying and they are keeping me informed, but they can’t install what they don’t have.

I will follow up with my fellow board members and see if we can make this happen. Wish us luck.