Abilities Not Disabilities

After more than 20 years on the advisory board for the Salem County New Jersey Office for the Disabled I have resigned. Advisory board meetings became too unproductive. There isn’t a budget for services for our disabled population unless they are in a school program or if they are a senior citizen. Well, they can attend programs that are available through the Office of Aging and Disabilities, but these programs are designed for senior citizens.

I have to give some credit to our politicians. They can’t allocate budget dollars to provide programs and services for our less able citizens that are too old for our education system, but they created a department that gives the perception that there are programs and services for this group. There is money for our seniors and the programs that the Office for the Aging and Disabled do a good job in providing programs and services. How many twenty something people do you know that are interested in programs designed for their grandparents?

I am not pointing fingers at the local politicians. Well, not really. The funding programs start at the state and the federal level. How many times have you heard a politician at any level talk about what they want to do for our less able (disabled) citizens. This is a group of citizens that have little or no political or financial clout. They went through our school systems in special education classes with an IEP (Individual Education Plan), but the unemployment rate for this group can be as high as 15% and only slightly lower than their percentage listed in our Bureau of Labor and census statistics. By the way, it is really hard to get clear information about their actual numbers. If someone can find these numbers, I would really appreciate your help in detailing them.

Anyway, why did I choose to write this blog. Well, the Salem County Office for The Disabled Advisory board no longer is involved with the Office of Aging and Disabilities. Most of us now have decided that if there are going to be additional programs and services for this group of citizens, it has to come from people in the community that want to add value to this group through activities that are age appropriate and fun. We had our first meeting on Tuesday evening and we are already developing plans for events and activities. We have also decided to not recreate the wheel. We are interested in working with existing agencies and groups and will be reaching out shortly.

If anyone is interested in joining us or has any suggestions, please leave a comment.

A new school year is starting and it is time for parents to assess the progress that your child has or has not made during the last school year. With all of the issues that Covid created within our schools, the affect on children with an IEP may have experienced an even greater need to review the IEP (Individual Education Plan). Was there a full IEP meeting last year to discuss results and plans for the new school year. Were the modifications discussed appropriate for return to in-person instruction? Does your school have all of the services and resources that your child needs to be successful?

I would strongly suggest that parents contact their Child Study Team to request a progress meeting for your child if you have any concerns about the accommodations, modifications, services and support that you child needs as soon as you notice a problem. The transition to back to in-person instruction can be difficult for all students, but special needs students have an IEP for a reason and it needs to be monitored to ensure that it is effective.

If your school has on-line grades, you should plan to check your child’s assignments, quiz and test grades. The teachers usually have an on-line web site that lists upcoming assignments and pertinent information that will help you to contact your child’s teachers. Keeping current with homework assignments and checking the on-line grades and completed assignments will give you a good idea on how things are going. You should have a copy of your child’s IEP and you should be having a conversation with your child about how the teachers are implementing the accommodations listed in the IEP. While I believe everything that I said above is a great strategy, keeping track of everything and trying to get information from our children can be difficult and quite time consuming. If you are not comfortable with technology, then everything gets even more difficult. So, what should you do?

The more a parent understands what the teachers are trying to accomplish, what accommodations were written in the IEP, and how successful your child is and what problems your child is experiencing, the better the outcomes will be achieved. However, if your child is getting A’s in their classes, but the scope and pace of the classes does not match the regular education curriculum and state tests indicate that your child is not proficient in the areas tested, I think that a parent needs to ask “what is the impact on my child in terms of career planning?” This is really important as children get into middle school and start planning for and applying for high school programs.

As your school transitions 8th grade IEP’s into a high school IEP, there should be career planning discussions. I strongly believe that parents should start talking to their children about career plans by the time they are in fifth grade. Students are now applying for specific high school programs during 8th grade and the programs they are applying for often use grades, test scores and attendance results from seventh grade. Therefore, it works best when there is an opportunity to spend a significant amount of time in career exploration. Children will change their mind as they get more information and process what is involved in preparing for various careers. If the schools aren’t doing this, it is really important that parents make the time to do this. In addition, if parents are honest about their child’s skills and interests, they have the most knowledge about their children.

The programs I am talking about may be STEM programs, performance arts programs, vocational programs and etc. (you need to talk to your child’s guidance counselor about what is available and the requirements for admission). The key element to keep in mind is that not everyone gets in and most programs use a rubric that depends heavily on academic proficiency and state test results. Parents need to make an honest assessment of their child’s strengths and weaknesses. I have mentioned in a previous blog that I have more than 25 years in corporate America and most of it in Human Resources. In that time I interviewed thousands of applicants and counseled employees about their career plans. The applicants that were hired, and the employees that were promoted in their careers, demonstrated a clearly communicated career plan and backed this up with related skills and appropriate experience. Those that didn’t weren’t hired.

Career choices begin much earlier than just ten years ago. As a middle school counselor in Gloucester County, NJ, I watched the county vocational school evolve into a program that used an high school curriculum to assist students in improving their chances of entering a career in the medical, engineering, business and computer fields. These became the featured programs that attracted the top students from all of the eight grade programs in the county and the number of vocational training slots were decreased. The number of spots for students with IEP’s also disappeared.

The high schools in our county responded by developing STEM (Science Technology Engineering and Math)  programs to retain their top students. The goal of most public high schools is to provide academic programs to prepare students for college, Most of the shops and home economic programs have been eliminated. The picture I am painting is one that does very little to assist students with IEP’s develop a viable career unless they fit into the all students should go to college mold.

Students in Gloucester County, NJ are applying for these top programs during 8th grade for programs that will start in high school. Since their attendance, grades, type and level of classes and state test scores from 7th grade (along with 1st marking period 8th grade results and possibly 6th grade results) are used as selection criteria, the need for early career planning is clearly necessary. What is the plan for students that are not competitive in this process? When should career planning start for those students? What is the role of the IEP in career planning?

The above comments and assertions require a great deal of additional information and planning. Please, start to think about career planning with your children and include them in the discussion as early as you believe that they can participate.

The most commented on blog that I have ever written has to do with the work that Salem County’s Habitat For Humanity does with their ramp program. I continue to receive comments like the following:

“My Aunt lives in Church Point, Louisiana and she hasn’t left her trailer home in 7 weeks because her legs give out going down the steps. This alarms me because she can not go to her appointments, the grocery store or even enjoy the outdoors. She is on a fixed income and can’t afford the cost of building a ramp. I am her niece and I would like to help her, but I live in Michigan its hard to help her get a ramp. She is not able to come and go as she needs and it I hope someone is able to help me assist in helping her get the ramp she needs.”

Contrast the above with what is happening in Salem County, New Jersey.

Habitat’s Ramp program exists and thrives due to Patty and Debbie encouraging me to step up to fill a HUGE GAP in our County’s budget. Your generous donations to our ramp program means that we now have 30 metal ramps out serving those who can’t afford one. Be a Patty – live generously. PS Pat is on our building committee and Tyler is one of our volunteers!!!!

This program exists and flourishes because of people like the group in the picture above. The local, state and federal budgets do not include money for ramp programs that will improve the lives of individuals that need a ramp to live a full life. It would be great if government funding could become a reality, but it seems like the real answer is to encourage communities all over the country to step up and help raise money to build ramps.

If you know someone that is in need of a ramp, try to search all of the local resources available including Habitat for Humanity, but if the problem is money, consider becoming a volunteer and help someone improve their life by helping to raise money and / or help with the construction or installation of a ramp.

When I was twelve years old, my parents became friendly with another family from our church. They had a son my age and a daughter that was my older sister’s age. We had visited them at their house and they visited us at our house. I remember my parents and my sisters having a good time. I didn’t have much in common with Chuck even though we were the same age. I was very active and loved riding my bike all over West Deptford, Westville and Woodbury. I also loved playing sports and exploring the woods, lakes and the river near my house.

Chuck liked to read, watch television and he knew everything about the Philadelphia Phillies. When he came to our house, or we went to his house, we mostly sat in the house or found a place to sit outside. We never had a catch or did anything that involved riding bikes or exploring. If the Phillies were playing, we did watch the game and Chuck knew so much more about the players and their statistics than I ever did. I did learn a lot about the Phillies and their players from Chuck, but what I wanted to do were all of the things that Chuck could never do. Chuck was in a wheel chair and wasn’t very healthy.

For a long time, I didn’t really think about Chuck and I didn’t come into contact with very many kids that were in a wheel chair or with other kids with disabilities. They were probably there, but I was self absorbed and didn’t pay attention. However, I started to pay attention during the spring semester. In some ways I was forced to pay attention because of my professor that taught the Abnormal Psychology class. I could have just attended class and do well on the tests, but he asked if anyone in the class wanted to go on some field trips to get an inside view of what Abnormal Psychology entailed from a therapist’s lens. It was extra credit and I decided to sign up.

The first trip was to a prison. This professor also worked with prisoners at this prison and he received permission for a small group of us to tour the prison and talk to the administration, the guards and some of the prisoners. The main thing I learned was that the medical model of therapy didn’t work very well with this group because they didn’t see themselves as sick and often interpreted kindness with weakness. Weakness was something that could be used to manipulate the therapy.

The second trip was to a facility for patients that were institutionalized by the courts or their families because of behaviors that made them a harm to themselves or others. I really don’t know what I learned from that experience because I was overwhelmed by the experience. I tried to understand this from the lectures and readings required for my Abnormal Psychology class, but mostly I realized I wouldn’t want to work in that facility. It was very depressing.

I did graduate from college with a Psychology major and a Special Education minor and participated in many experiences where I came into contact with a wide range of disabilities. I also was required to read case files, participate in role playing and present my findings and feelings to professors and classmates. During this process, I started to think of my time with Chuck and what a terrible friend I was to him. The easy answer is that I was young, but the real answer was that I didn’t take the time to see him and really get to know him. With that said, I haven’t forgot my time with Chuck and what a really caring person he was.

He would constantly tell me that it was okay if I wanted to play with my other friends and I didn’t have to come to his house if I didn’t want to. My parents had other ideas and I did spend time with Chuck. He didn’t live a long life and I still think of him and wonder what I could have learned from him if I could have been a better friend. I couldn’t change that, but I could try to really see others that have a “disability” and see them and not just their “disability”. I have been an advocate since college to help others see their abilities and have Chuck and my professors to thank for that. I think it is wonderful that I had so many mentors that helped me develop this interest and encouraged me to pursue this goal.

My family also had a big part in developing my interest in being an advocate. I saw my parents take care of a lot of people as I grew up. There were always people that were at our house and invited to eat with us. There were often people that stayed at our house because of their own economic or family problems, There were numerous situations that involved my parents giving food, clothing, furniture and money to people that were having a hard time. There were also times that I saw both of my parents intervene in situations were not being treated fairly. They were not shy about letting someone know that they needed to stop treating someone in a rude or unfair manner.

As time passed from childhood to college to adulthood, I realized that there are many reasons that make it difficult for people with physical, social, economic or intellectual limitations to advocate for themselves. I also noticed that our society and our politics don’t do an effective job in helping these individuals and that many people avoid seeing these people. At some point, all of us need to decide who are our neighbors and what is our responsibility as their neighbor.

People can choose to live in gated communities, limit their contacts to exclusive clubs and locations and avoid contact with anyone that makes them feel uncomfortable. People can tell themselves that there are agencies and organizations that take care of those people, but the reality is that there are very limited resources available to make an impact. As an advocate, I need to make a decision about what I can do to make a difference and encourage others to do the same.

I encourage everyone to see the people around them and try to understand that there is something that you can do to help others. What a person can do and what they decide to do is a personal decision, but at least make an attempt to look beyond your world and consider what you can do where you are with what time and financial resources that are at your disposal.

I am in North Carolina visiting my oldest son Jonathan and his family and had the chance to watch the North Carolina AAU District qualifications. My youngest grandson Jackson who is eleven competed in three events and placed second in each event. As a grandfather, I was proud and excited and happy that he did so well and qualified for the regionals in July. However, this blog is not about Jackson. It is about the behaviors that enable children to develop and grow and succeed.

This blog is about the families that support their children, sacrifice their time and resources and the larger family that supports all of theses athletes. It would be easy to talk about all of the things that Jackson and his parents have done to help him be successful and it really is an impressive story, but the bigger story is about the larger family that these athletes have.

I was walking away from the bleachers where I was watching various events and heading back to the tent area where my family was waiting for Jackson’s next event and I noticed the shirt that said it all. It had the name of the track club followed by # we are more than track, we are family. I had a brief conversation with the man wearing the shirt and told him that I really loved his shirt. We talked briefly about what a great event this was and then he saw one of his athletes. He was praising him on how well he did and how proud he was of him. He hadn’t won the event and the conversation was about the progress he was making and all of the things he did well.

As I walked back to our tent, I noticed so many examples of positive messages by parents to their children, but also from one athlete to another. Some conversations were to console, some to motivate, some to mentor and many more that were just about hanging out together. As I watched the various events, I noticed team mates encouraging their fellow team members as they ran and calling out suggestions about form and pace. I noticed that the loudest clapping and encouragement was for those runners that weren’t going to win the race and were struggling to finish the race. Their track family were with them to the end of the race and the fans in the stands joined in to encourage them. You have probably heard the phrase: “It takes a village to raise a child” and this was clearly an example of that.

When I did get back to our tent, Jackson was resting for his next event when the boy who had finished the 800 meters in front of him stopped to congratulate him on the race that he had run. They really didn’t know each other, but it was really a great show of sportsmanship. Later, Jackson and this boy were playing soccer with runners from other teams and other ages. No adults were needed to supervise or coach them. They were already enabled by all of the things that their family and extended families have been doing for a long time.

I had some more time to process Aaron’s death and I suppose I knew that this was a possibility. He was in the hospital for at least one month for each of the last three years and he had significant medical conditions. Each time he was released from the hospital he knew that there was a possibility that he would die alone on the streets of Camden. He was afraid this would happen and he wanted to turn things around so this didn’t happen. He wanted to have a more meaningful life. He wanted to be part of his family again. He was motivated to change.

Aaron did change and the program and counselors at Cooper Hospital’s Extended Care Program gave him the support and confidence to move forward. There was a key factor that the program could not provide, The amount of additional support and structure that only a mentor, a close friend or a family member that was willing to make a commitment could provide. Quite frankly, Aaron couldn’t navigate all of the barriers that bureaucracies, finances and technology would require of him.

He had a room, but he needed to find a way to get food and prepare food. If you have stayed in a motel room you know how difficult this would be for an extended time. If you don’t have a car, you know how hard it would be to get what you need and transport it back to your motel room. If there aren’t washer and dryer facilities on the premises you know how hard it would be to keep your clothes clean. If you haven’t dealt with agencies like Social Security and banks imagine how hard it would be to provide all of the information that they require, Imagine the long wait times on the phone and the number of times you are asked to contact another person or call back later when your phone has limited minutes. Imagine keeping this together when you suffer from anxiety and your frustration causes you to just give up.

All of the examples above, and more, are the reasons that addicts in recovery need that person that is able to encourage them and provide the time to navigate these barriers. I was able to do this for Aaron and he was very appreciative of my help. When I was able to help him get his Social Security claim settled and he was going to receive a monthly check, he asked me to be his Representative Payee so he wouldn’t be tempted to spend this money in an ineffective manner. He didn’t feel he could handle a checking account and wouldn’t be able to budget his money properly. This also gave me a chance to talk to him about budgeting money and planning ahead.

With his claim settled, he was responsible for paying for his housing at the motel and for securing more permanent housing. The cost of the motel and the cost of housing became very upsetting to him. He didn’t see how he was going to make this work and started to become anxious about becoming homeless again and everything that came with that possibility. This was clearly an issue that required more than assurances and encouragement. He clearly would not be able to make this work. Living independently was going to cost more than he was going to receive from Social Security and he wasn’t going to be able to do this on his own. Now that his claim was settled and he had “graduated” from the program, he still didn’t have the confidence, knowledge or skill to make this happen by himself.

He needed to be near a bus route to get services and to get food and essentials. He needed to be close to possible sources of work if he was going to be successful in moving forward as an independent person. He needed to be close enough to people that could help him so that they actually would be able to help him. He needed to find housing that he could actually afford. This list went on and on in his mind and he was starting to spiral out of control.

I was working on these issues when I received a call that he was in the ICU at Jefferson Hospital, Cherry Hill. At first, the prognosis was very bleak because of his medical condition and he was preparing to die. After a few days, he started to rally and was moved to another section of ICU and he seemed to be making progress, We talked about what he was going to do when he got out of the hospital and his tone was positive and forward looking. He talked about how great it was that family came to see him and how happy he was to be part of his family again. I told him I would see him tomorrow and how proud I was of his progress. I told him we would figure this out and he smiled and said that he was going to make this happen, He told me again how much he appreciated my help and we would talk again tomorrow.

I received an early morning call from the doctor that was treating him and he told me that Aaron had died. He was very easy to talk to and answered all of my questions. Aaron’s medical conditions were too serious and his health too compromised for him to make a recovery. I am very sad that he passed, but so happy that he had a taste of a more normal life from September to April. RIP Aaron Joseph Hentz (February 9, 1974 to April 19, 2021). You are our family and you will be buried with your family.

It has been difficult for me and my family since my nephew Aaron passed and it has been difficult getting back to writing. Part of this is related to taking care of his final affairs, but the real reason is disappointment. I am not disappointed in him or the system, but I believed that he was going to finally become the independent person that I thought that he could become.

There was so much progress. He was off of drugs and off of the streets of Camden. He was in a motel. He was now getting a monthly check to buy food, clothes and even a watch. He was looking healthy, dressing nicely and talking about things that he was going to do. But, now that his Social Security claim was settled, he was not receiving subsidized housing and had to pay for housing out of his money. I assured him that we could handle this, but he was anxious about his inability to find more permanent housing. His contact person was not having any success in helping him find a place and I could tell that this really bothered him.

I paid for two weeks at the motel out of his money and gave him $200.00 for his expenses because I was going to be in North Carolina for almost two weeks. I assured him we would make this work. I talked to my brother and we decided that we would buy an investment property that he could rent from us. We could offer him a decent place to live for less than someone else and we could get him involved in making renovations. Joe and I were going to make this happen.

When I returned home a few days early, I received a call from Jefferson Hospital in Cherry Hill that Aaron had been admitted and his medical condition was critical. It is too soon to go over all that happened, but years of drug abuse and compromised medical conditions had become more than the medical professionals could handle. They indicated that the chance of recovery was remote and he died on the day that the next payment to extend his stay at the motel was due.

I will try to make some other comments in my next post. Aaron’s life ended with the knowledge that his family cared about him and that he was important to us.

I have had some time to reflect on my last post and realize that I can try and plan what Aaron should do and how he should do it, but he is an adult and he needs to learn to make his own decisions. He needs to get his temporary housing approved every two weeks and also work with Social Services to look for an apartment. I asked him to have the case worker call me so that I can assist in this search. It seems as though he forgets to do this and I am concerned that he will not be approved for his temporary housing at the hotel and become homeless again. I feel like I am more vested in this than he is.

I also think about how my mother and sister enabled him by fixing problems that he created and how he really never learned to make independent decisions. It was always my mother that was trying to fix the problem and bail him out financially or by not giving up as she called various offices, programs and individuals to try and fix the latest problem. My mother was a force to reckon with and would not take no as an answer. When she passed, this fell to my sister, Aaron’s mother. The problem was that my mother was doing the same thing for her daughter and Aaron’s mother wasn’t able to fix her own problems after my mother passed. My sister’s life started to fall apart after our mother passed.

Aaron was living on the streets of Camden on a regular basis after my mother passed and going back to his mother’s apartment to get food and money on an inconsistent time frame. He would show up, eat all of the food in the house, harass her for money and leave after she called the police. She often called me and asked me to make him leave, but I reminded her that this was an on-going routine and I couldn’t make it stop. She and my mother both called the police to get Aaron to leave and the police also told both of them that there wasn’t anything that they could do unless they pressed charges. Finally, the apartment complex got tired of this problem and started proceedings to prohibit Aaron from coming to the apartment. It ended with the apartment complex evicting Linda.

During this eviction process, Linda started using more drugs and her health deteriorated to the point that I found her on the floor of her apartment unresponsive and called 911. This was the beginning of the end for Linda who died less than two months later. It was the beginning of the end for Aaron as well because he had no where to go except the streets of Camden. For the next three years he lived on the streets of Camden and spend about 32 days in Cooper Hospital each of those three years and almost died. It was at this point that he made a connection with the various programs at Cooper and has reached this point where he is drug free and relatively healthy.

Hope? Yes, I believe he has hope for continued improvement and the possibility of a more normal life. However, there are still so many obstacles to overcome and he still hasn’t learned to manage the money that he now gets or how to persist in following through with tasks that will get him into his own apartment. I keep wondering if the next 14 days will be his last temporary housing at the motel. I keep wondering what can be done if he doesn’t have anywhere to go and how to get him to really make finding an apartment a real priority.

I haven’t written about my nephew Aaron in a while and I thought I would share a little more about his journey. The good news is that Cooper Hospital’s extended care program has been excellent in helping him extend his sobriety and in providing medical and psychological follow up care. I have seen first hand how positive they are toward him as well as how they also provide him with necessary guidance when he isn’t doing all that he should do.

He lost the cell phone that they provided to him and explained that he would have to replace the phone that he lost. I bought him another phone at Walmart (about $40.00) and we met with an LPN that assists him. She was caring and supportive, but also discussed how he missed the transportation set up to bring him into their office because the driver couldn’t reach him by phone to let him know he was at the motel. I explained that I wasn’t able to contact him to find out if he needed food or to give him his weekly money allowance because I couldn’t contact him. He shook his head in agreement and told us that he was upset with himself for losing the phone.

Less than three weeks later he lost another phone on the bus from Camden to his motel room. He was able to get someone to allow him to call me and tell me about this. He was desperate and told me he was out of food and money. It was snowing and he wanted me to come to Cherry Hill that evening. When he is desperate, his bipolar tendencies manifest themselves in pleading and negotiating with me. I calmly explained that I wasn’t going to drive in a snow storm and used the opportunity to discuss how losing another phone made his life more difficult. I could hear the person that lent him the phone asking him to hang up and give them their phone back. I told him that I would be at his motel room two days from our conversation at two o’clock and hung up.

That may seem harsh, but I didn’t create the problem and wasn’t able to drive 45 minutes each way until the day and time I told him. In addition to this, I had to get the food that he wanted. I had spent a lot of time with his counselors, Social Security and a bank to get his claim settled and become his representative payee. I have tried to explain how difficult and time consuming this was, and he told me how appreciative he was, but he still reacts like an impatient teenager that just happens to be 47 years old.

I drove to Cherry Hill to give him his food and we went to the Walmart that was near him to buy another phone and minutes for the phone. Without being preachy, but needing to make a point, I explained how this impacted both of us and how he needed to be more responsible with this phone, Now that his claim has been settled, I increased the amount of money that he gets weekly and set up my next visit. Less than a week later, and before the day and time scheduled, he begged me to meet him in Camden for his next doctor’s appointment and meet with his LPN / counselor.

It actually worked out well because Social Security started a re-review of his claim and they needed 12 pages of paperwork completed that also needed medical information. As I talked to him, I confirmed that he received his $600 stimulus payment in January and that he had spent it all. He had a lot of new clothes, but really couldn’t really explain how he spent all of the money. As we were leaving the office, he became very agitated and insisted that he didn’t have any money and was starving and had to get a prescription. This really concerned me because that was how he had acted when he was using drugs. I am not sure what to think and not sure what to do, but they do test him on a regular basis. This is not a short term process and is subject to change,

The Salem County Department of Health and Human Services and the Salem County Office on Aging and Disabilities is offering Legal Talks on Thursday, 1/28/21 from 1 – 3 pm by telephone or Zoom. The topic is “Tenant’s Rights During Covid” and is free for Salem County residents. Call 856 339 8622 for the required advanced registration and to receive the registration code.

For transportation to the next Scoot trip to Shop Rite call 856 339 8644

Stay connected: www,facebook.com/salemcounty.ooa and scseniors@salemcountynj.gov