Author: Kevin Núñez

  • Toes in the Sand

    Toes in the Sand

    I want to wish all my readers a wonderful Wednesday. for this week’s post, I decided to share an excerpt from my first publication Confessions From Disability  Limbo  Available exclusively on Amazon Please enjoy see you next Wednesday. I welcome all comments Good and bad.

    There is a question that every person with a disability gets asked a few times in their life. “What would you do if you had an entire day without your disability?” The first thing I would do is get up as early as possible because I know I would need every minute. I would stand up and use the bathroom all by myself. It always felt a little emasculating to pee sitting down to be perfectly honest. Then I would get dressed and find a baseball glove and throw some pitches on the mound. I have no interest in batting. Just let me throw the ball, to get rid of all of my frustrations. Next, I would get in the car and listen to whatever music I wanted, because no one could change stations but me. I would drive to as many friends as I could just to give them hugs. Something that no one realizes is because I’m sitting down, I’ve never actually hugged someone. I always have to wait till they give me one. Make a quick stop at the beach next, just to feel the sand on my toes. 

    The last thing I would do is get all dressed up and go dancing. This is what I want most of all. I would find the prettiest girl on the dance floor and dip her just like they do in old movies. I know what you’re thinking. “You could go dancing now.” I have taken my wheelchair out on the dance floor many times. But I want to go to a club and dance all night. Even though I have tons of wonderful staff and Friends I have nobody to go to stay out all night with and just dance. I would dance until the last minute until I fell because the 24 hours had expired. Then I would get back to my chair with a gigantic smile on my face.

  • Stand and Hug

    Stand and Hug

    “Can you stand up?” That’s something I get asked all the time. So let me answer the question once and for all. The answer is yes and no at the same time. I can bear my weight which creates the illusion that I’m standing but in reality, I can tip over at any moment once someone places me in that standing position. The only way I can stand semi-independently is if I’m holding on to a grab bar or something of that nature. Eventually, my arms will give out and I will be down on the floor until someone comes and picks me up. Let me be clear, when I say I am bearing my own weight in this case it means that I’m doing the work my muscles are sustaining my body mass in this position. Someone still needs to help stabilize me. They should not have to exert any effort at all. The ironic thing is so many people in my life have never seen me do this activity. I only do it when I am about to transfer or in some therapeutic setting. You don’t need to be a physical therapist or a caregiver to get me into this position. It just takes a lot of practice, not skill. The practice is just confidence-building for the other person to realize you are not going to drop me and we really can’t hurt each other. The cool thing about this activity is that it is in the perfect position for me to hug others.

    Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Philippians 4:8 NIV

    Something people don’t realize is because I’m always sitting down I can never give the people I love a gentle embrace. I always have to wait for them to give me one. People know me in one of two ways: a loudmouth obnoxious joker or a constant professional looking for the next opportunity to advocate for others. People are so used to seeing me in a seated position they don’t even think twice about seeing me stand up. The look of shock and horror I receive when I ask people “Can you send me up so I can give you a hug” never gets old. Sometimes I don’t ask because I know they would feel uncomfortable. That’s one of the reasons why I choose to publish this. We live in a world where showing affection is often wrong and frowned upon. So many people require simple human contact. These are the people I’ve always wanted to hug but never have.

    My parents, step-parents, and grandparents have all felt my embrace since they have all transferred me at one point or another. So even though I love you all very much this list is not for you. Thank you for your strong and kind hugs throughout the years. Please remember like always the order doesn’t matter because I love them all in one way or another.

    First, I owe so many hugs to my little cousins. I usually only went to Puerto Rico on vacation and I was so much older than most of them. A lot of them have never seen me without my wheelchair. 

    Next would be without a doubt my colleagues at the New Jersey Council on Developmental Disabilities becoming an advocate changed my life. Some of my colleagues watched me grow up in front of their eyes. I would give every one of them a hug. I know standing up in the middle of a board room it’s probably not the most professional thing but I think if I ever really did this they would make an exception. 

    Both of my siblings are next, I have a twin brother with a similar disability because we’re both sitting down most of the time. I’ve never hugged my brother. I am a notoriously non-crier but  I’m pretty sure this one would make me a little Misty to say the very least. Picture it living with someone for over 30 years and never hugging them.  My little sister who is no longer little has now gone off to college and even though she is “normal” she never actually stood me up. I have no doubt she can do it since she has seen it done a thousand times. It’s just one of those things we never got around to. She has never come into the house or left the house without giving me one. I just think I owe her one now.

    Finally, there’s one person I can’t wait to hug: my future girlfriend. It will be such a wonderful experience holding her and letting her feel safe and warm just before kissing her. As with all my blogs, I hope this changes your perspective on the human experience. I dare all of you to go out this week and give more hugs. Somebody will need it even if they don’t say it. Thank you for reading and see you next Wednesday.

  • The Urgency for the Disability Workforce

    The Urgency for the Disability Workforce

    Hello, my wonderful reader thank you once again for choosing to spend a little time with me on your Wednesday. I get asked every so often what do you do for a living? In today’s post, I want to provide a glimpse into that. The following are my remarks that were released as part of the event that was held on May 4, 2022, by the New Jersey Council on Developmental Disabilities (NJCDD.) I hope you enjoyed and I can’t wait to read your comments.

    “The tongue has the power of life and death, and those who love it will eat its fruit.” Proverbs 18:21 NIV

     NOTE NJCDD Did not sponsor this post or any other work on this website. The statement featured is the opinion of the author prior to editing on the date of release. You can find a full copy of the report mentioned at the bottom of this post. 

    Greetings and warmest regards, Thank you all for making time to discuss this very prevalent issue affecting the most underserved and underrepresented population in New Jersey and the nation at large. My name is Kevin Nuñez I am fortunate to be the current Vice-Chair of the New Jersey Council on Developmental Disabilities. I’m a 34-year-old Puerto Rican male living with Cerebral Palsy.

    It is a well-known statistic that one in four Americans are diagnosed with some form of developmental disability, this is roughly 25% of our population. Our population is willing and able to pay their share in taxes and become contributing members of their local communities. All we need are solid opportunities. The reality is the Employment First policy that was passed a decade ago did not become a call to action but instead a slogan for stakeholders. The intent was there but the execution was not. The outline steps proposed in his plan are prudent and cost-effective.

    Too often have individuals like myself been threatened with the $2,000 asset limit, as we reached the end of educational entitlement. Recently legislation was passed to enhance New Jersey’s WorrkAbility to eliminate the unearned income caps and age requirements. It is common sense measures like these that would create the chances for this population to not only succeed on a temporary basis but thrive in a long term. However, if individuals and families do not know about these programs as they reach the critical age, then the tireless work of the advocates and legislators would be for nothing. education and sustainability are the keys to American progression. 

    If we invest in the individual and what their needs are to maintain competitive employment the disability system would not be so overwhelmed, the reverberation would be that those who can work could help support those who need more intense support and cannot. one hand has to wash the other it’s that simple.  The employment first initiative is derived from the idea of person first. 

    In closing, I would like to leave you with this,  “promote the general Welfare, and secure the Blessings of Liberty” This comes directly from the US Constitution. The same one that begins with “ We the people”  PEOPLE with disabilities just want the same opportunities as every other American. Thank you for your time and have a good day.

  • Silent Warriors

    Silent Warriors

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    How do you use your voice? Our voices are one gift we usually take for granted. I know I do. As an advocate I always try to remember That I don’t speak for myself, I speak for others as well if not more. We all speak too much and say things we shouldn’t. Could you imagine not being able to say anything at all? We need to stop complaining about every little thing and appreciate what we already have. I have been fortunate enough in my travels to meet some wonderful individuals who are non-verbal. They are some of the best people in this world, only we never take the time to notice. I hope this post will shine a light on those we have forgotten. This past year has been difficult for all of us. Imagine being scared and not being able to express it or fully understand it.

     This will not be the longest post I have ever written or even the most eloquent, but I pray it makes the biggest difference in changing our collective perspective. Below are 10 simple sentences that we’ve all said, but if we could never have said them at all, our lives would have been greatly affected. 

    The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord?” Exodus 4:11 NIV

    To my dear friends who have never spoken a word, thank you for your patience and understanding from lack of mindfulness. Please take your time reading each statement and let it flow through you.

    1. “I don’t like the feeling of this shirt.”
    2. “Why do my shoes not feel right?”
    3. “How long is this car ride? I have to go to the bathroom. “
    4. “What happened to that gracious lady who always remembered to put mayonnaise on my sandwiches? “
    5. “I don’t want to eat this sandwich, it’s so dry.”
    6. “Your hands are icy.”
    7. “My ear hurts. I really think I need to go to the doctor.” 
    8. “I don’t want to watch this TV show. Why do they always put it on?”
    9. “That person really hurt me! Don’t put me with them!”
    10. “I wish the girl knew how pretty she really was.”

    Disability Limbo Newsletter

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  • VOLUNTARY HOSTAGE SITUATION

    VOLUNTARY HOSTAGE SITUATION

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    The following post was written by Ali Ingersoll as a simple Facebook post that I absolutely loved because it describes the life of a person with a disability better than I ever could. She is an outstanding disability advocate and blogger you can find more of her work on her website Quickly Quad Diaries

    This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village – caregivers, family, friends, agencies, medical professionals, etc.

    I need to first start out by saying that anyone willing to help me, paid or not paid, physically live my life each day is such a beautiful gift and I appreciate every single human who takes time out of their life to make my life possible.

    However, there is a side of life many of you who do not live with a disability cannot possibly see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.

    I have to be mindful of those who take care of me. I have to make sure they feel safe, compensated, loved, taken care of, and appreciated. This is important. Anyone who is helping me is responsible for making sure I physically stay alive each day. While I might direct my life I don’t always have control at the same time. This can be emotionally crushing at times.

    How so? Well, if I am not carefully managing the multiple emotions of people in my household to make sure they remain happy and healthy then they either will not be able to take care of me or will not want to. Many people feed off my positivity and determination. This is not to say I don’t have my hard days, but who wants to the care of a person who is grumpy or angry or running a drill Sgt. type of life each and every moment?

    If I want to snack at nighttime I have to ask someone for it. I can’t simply get up and get it myself. However, if I just asked that person to do four things in a row for me by getting up and down they might get a little bit annoyed with yet another thing I ask them because they have been running around for me. I have to strategically think about how and when I ask for things.

    At times I feel like I have become my own emotional hostage. I have to push down many of my personal emotions to make sure others around me are emotionally taken care of before dealing with my own personal emotions at times. This is hard. This can feel so lonely. Often times, I feel more emotionally disabled than I do physically. However, this is my choice. It is a decision I’ve made.

    My life hinges upon the way other people feel. Think about this. Critically. If you are able-bodied and you want something, you simply get up or go out and get it. I can’t do this. Sometimes I sit and cry to myself at night after a long day because everyone else around me is having a hard day, so I need to take care of them, so they will take care of me. It’s a give-and-take, back and forth, and it can be utterly emotionally draining.

    I know this is my life. I don’t often complain. I keep pushing forward, but it can be devastating at moments. I’ve learned to live this way for the last 12 years, and I am strong, but even I have my moments. I do know many of my friends who have a strict line between church and state with respect to making sure people’s emotions do not bleed into their own lives when they are being taken care of.

    I have tried this. It has failed for me. If I do not take care of those around me then those around me may not have the will or desire to help me.

    People around me thrive on my positivity and go-getter attitude. This is great, and most of the time I compartmentalize many of my emotions. I’m not saying this is healthy. It is not. However, this is my life. This is how I’ve had to adjust and it can be utterly terrifying. Truly.

    My biggest fear is being left alone and not having anyone to have my back so that I don’t physically die in a day. The simplest of things can kill me – my catheter getting clogged and overfilling, being alone, and having a stroke. It can happen in 30 minutes.

    So, I have somehow willingly put myself in my own mental hostage situation. It is hard. It is life. It is my life. These are the compromises I have to make in order to have a household of people around me who want to be around me, and help me.

    I only ask that the next time you get up to go get a cup of coffee or tea you think about how you are able to do that on your own. You don’t need help. Just take a moment appreciate your fully functioning body is all I ask.

    Disability Limbo Newsletter

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  • Answering The Call

    Answering The Call

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    Happy Wednesday my wonderful friends. As always I hope this message finds you well. I want to issue a small warning to my readers I’m going to talk about my spiritual growth as a disability advocate in this post, If it is not the content you are interested in please come back next week.   saying that, I might lose some followers but I’m confident whoever this message is meant to reach the Holy Spirit will lead them to it.

     Everyone has a little voice inside their head that tells them what to do, I believe that voice for me was the Holy Spirit. “It said three things, “advocate, encourage, and read. “ It’s no secret that I do not like to read. I have not read a full book since high school and I’m not ashamed to admit that.  I kept on ignoring the voice but it wouldn’t shut up! So, on a Saturday night, I downloaded a few Bible apps not expecting anything of it.

    For me, no burning bush or demons was making my head spin.  just a few words when I was alone in quiet time. little by little I found myself spending more time with the Holy Father God taking baby steps into a much larger world. This past week I took a giant step! For those of you who don’t know I was appointed to the New Jersey Council on Developmental Disabilities (NJCDD) in September of 2016. I thought this would be the greatest achievement of my life, a chance to finally be recognized. People could finally acknowledge me as a person and not another “Boy in a wheelchair” Equal to every major organization for the last two years we’ve done all of our work virtually.  We were finally able to hold our first public meeting In a hybrid format. That’s when everything changed for me.

    But by the grace of God I am what I am, and his grace to me was not without effect. No, I worked harder than all of them—yet not I, but the grace of God that was with me.” 1 Corinthians 15:10 NIV

    Over the last 2 years, I have been on countless Zoom calls being the voice for people who don’t have access to technology. The truth is in a zoom box meetings become less formal. It’s easy to be more confident in your socks while sitting in a big comfortable chair next to your bed. I believe this shutdown happened for a reason it made us all sit back and reflect. The work I do does not benefit others, It is for others. I did not earn a spot at the table with my colleagues I don’t deserve to be at the table with them. I was chosen to be there with them. I may never have a big fancy house. Girls may never let me out of the friend zone. Thanks Some days, but I know it’s for a greater purpose. Thank you,  Lord Jesus, for making me the way I am. Thank you to anyone who took the time to read this I will see you next week.

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  • Unnecessary Labels

    Unnecessary Labels

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    What makes a person who they are? Is it their spirituality, is it their sexual orientation, is it their ethnicity, is it their disability, or whatever other condition they are diagnosed with? Everyone I know is on medication for some illness.  Doctors love to diagnose what is wrong with us.  Did you ever notice that we give them a jump start before we even walk into the office?  Every time you go into a medical facility we have to put a checkmark next to boxes so they can classify us.  The problem with this line of thinking is that the essence of a human being does not fit in the box. Please try something at this moment, draw a heart on a piece of paper. Now draw a box around the heart you just made. It doesn’t work, does it?   Sure you can make it work, but you know it still doesn’t look natural.

    “Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will.”

    Romans 12:2 NIV

    According to the boxes of this world, I am a disabled, Christian, Hispanic heterosexual male. These categories all describe me correctly with one major exception, they don’t take into account how I see myself. If I don’t respect and acknowledge myself As Kevin the complete person then I cannot expect anyone else to do the same. Labels try to control us and we get so attached to them some people stop at nothing to defend them. When are we going to realize there’s more to this world? It’s something we all know, we just don’t want to accept it because our lives would become much more complicated.  I know some of you out there are saying “My life is already messed up enough, I can’t afford to complicate it anymore.”

    My dear friends, That is precise to the point labels are distractions not complications. Nobody is just one of these treats we are all an intersection of a thousand little things we need to step back and see the whole person. Don’t get too lost in the pieces of the puzzle you forget to look at the laptop. This world is ugly because people refuse to see the beauty in it. I hope these words helped you take a deep breath before moving on me today. May the blessings come down upon you I will see you next week.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • The Heart of the Sinner

    The Heart of the Sinner

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    Growing up my dad always said to me, “You were put in that wheelchair for a reason, find out what it was for.” Happy Wednesday my friends as always I wish peace and joy to whoever reads this. I want to have a continuous topic on my blog that will upset some people but I know it must be done. I want to talk about faith. There are two things I want to get clear before I begin.

     First I’m not trying to show off my spirituality. I am a hypocrite like each one of us. This website is not about me but about helping others grow. I pray that my experiences will do that. It is always best to pray quietly but something is on my heart that I need to share. Second, I spiritually identify as a Christian and follow Jesus Christ. I do not belong to any church or any other religious organization. It is not my intent to offend anyone if you feel uncomfortable at any time please do not hesitate to stop reading and come back next week.

    "But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me." 2 Corinthians 12:9 NIV

    I refer back to this verse quite a bit in all my work,  that is because I believe it saved my life. Jesus saved my life but he used this verse to do it. For context, this was written in a moment of agony by one of the apostles of Jesus. We all have weaknesses that keep us from loving God as much as we all should and want to. Life is difficult and the world around us is so cold. We are all in need of that warm embrace that we don’t deserve because we have all fallen short. Even if we don’t consciously realize it we sin every day. 

     I love Jesus, I love being the rock for my family, I love serving others, and I never look for a thank you. Helping my family pay bills may be stressful every month. Being the deciding vote to choose who gets a $100,000 grant is not fun. I can pray for wisdom and guidance and I will not lose sleep over it. I don’t like this world disabled citizens will never have true value. I dislike being the only representative for my community in meeting with legislators. However, I have come to understand that I was given this gift for a purpose. my weakness, The thorn in my side is loneliness. 

    If you followed my creations for some time now you’ll know I long for a partner to share my life with. We all confuse companionship with infatuation and lust. Earthly desire is different than spiritual love.  It takes time and discipline to learn the difference. Truthfully I struggle sometimes. I know and accept that I am not worthy of these gifts and salvation I have been given. I cannot earn it. I can only let Jesus change me one day at a time. Slowly I have learned to follow through with my new mission. I may stumble but he’s right there to pick me up because he loves me like a good friend.

     People know there’s something more than this physical plane. What distraction is keeping you from God in your life?  Thank you to God for letting me write this and thank you for reading it. See you next time.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • Get to Know Each Other

    Get to Know Each Other

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    Hello everyone, let’s spend a few minutes together and escape from life. I wanted to have some fun today. I designed this website and blog to be an ongoing conversation to bridge the gaps between the disability community and the general public conversation but I can only give you one perspective. I need you guys to get involved as well, Therefore I came up with this list of questions for anyone who takes the time to read it. Feel free to answer all questions or as many as you feel comfortable.

    "My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
    Psalms 73:26 NIV"
    1. This should be obvious, can someone give me an accurate description of what it’s like to run?
    2. It always takes me about an hour and a half to get ready for the day with the help of others. How long does it usually take you to get ready for the day?
    3. What is the first thing you think of when you see someone in a wheelchair or some other visible disability?
    4. Do you put your socks on before or after you put your pants on? I never really have a choice, so I never really thought about it.
    5. I know I need help in the bathroom; I have to inform people. Why do people always announce it when they leave the room?
    6. Every parent wants a “healthy” child, what exactly is that to you?
    7. What exactly is so “inspirational” about people with disabilities?
    8. We live in a world where physical appearance is idolized, what is so hard about looking at the person?
    9. Why do people want to spend so much time alone on the toilet? Balancing is tricky for me. I want to get off of that thing as soon as possible. Why do you want your leg to go numb?
    10. How long can you stand up before you feel tired?
    11.  How long can you sit down before you feel tired? 
    12. What’s one physical activity that you’ve always wanted to do? My list is a little long.
    13. What’s one fear when you socialize or date someone with a disability?
    14. f you had my disability what would be the one thing that scares you?

    I hope this made you laugh, or at the very least give you something to think about. Do you have any questions for me? That you want me to answer in a blog? See you next time.  Have a great day.

    Disability Limbo Newsletter

    I started Letters from the Limbo as a way to connect with you on a deeper level. Twice a month, I send out an email filled with personal anecdotes, professional updates (like my recent reelection as Vice Chair of the NJCDD), and the policy insights I don’t share anywhere else. This isn’t just another email—it’s an unfiltered look at the life of a disability advocate. Join my community and get an exclusive, honest look at the work that matters

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  • New advocate in Washington DC

    New advocate in Washington DC

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    Mr. Paul Aronsohn is New Jersey’s first Ombudsman on intellectual and developmental disabilities. Do any of you know what an Ombudsman is? I thought he was just another bureaucratic pencil pusher. His job is to help people and families navigate the complex disability system. I have been fortunate to work alongside the ombudsman for the last few years in my Journeys as an advocate. I admire his position constantly juggling his appointed positions by the governor’s Administration and fighting for the rights of individuals and families at the same time.

    “Do not forget to show hospitality to strangers, for by so doing some people have shown hospitality to angels without knowing it.” Hebrews 13:2 NIV

    On a personal note, this position would be my dream job. There was recently some good news from his office that I needed to share with us possible. it gave me a good kind of envy I was not asked by any organization to publish this.

    “Signed into law by Governor Chris Christie in January 2018, the Office was made operational when Governor Phil Murphy appointed the first Ombudsman a few months later.The legislation creating the Office outlines specific responsibilities, which can be grouped into 3 categories:

    Assisting individuals and families to navigate New Jersey’s system of care to get the services and supports they need and deserve;

    Working with individuals and families to identify opportunities for improving the system; and

    Helping to ensure that the voice of individuals and families is heard in a meaningful way in decisions that directly affect them as well as in larger policy discussions.”

    The Garden State does not have the best reputation on the national stage. sadly we are known more for Jersey Shore and trash TV. on the subject of disability, I believe this state has not led any significant category on a spreadsheet. Thanks to Mr.Aronsohn that has changed, We made it to the White House. The Ombudsman The President’s Committee for People with Intellectual Disabilities. (PCPID)

    “In 1966, President Lyndon B. Johnson established The President’s Committee for People with Intellectual Disabilities (PCPID), formerly The President’s Committee on Mental Retardation, to ensure the right of a “decent, dignified place in society” for people with intellectual disabilities. Since that time, PCPID has served as a federal advisor to the President and the Secretary of Health and Human Services on matters relating to persons with intellectual disabilities. PCPID promotes policies and initiatives that support independence and lifelong community inclusion. ACL provides oversight and support for PCPID.”

    I truly feel that his recommendations will be common-sense solutions to problems we have had for too long. I strongly suspect that New Jersey can make a good conclusion Thank you Mr.Aronsohn for your service. Have a wonderful day everyone. As always all comments are welcome and feel free to contact me at any time.

    Source Material:

    https://www.disabilityombudsman.nj.gov/

    https://acl.gov/programs/empowering-advocacy/presidents-committee-people

    https://www.whitehouse.gov/briefing-room/statements-releases/2022/03/11/president-biden-announces-key-appointments-to-the-presidents-committee-for-people-with-intellectual-disabilities/

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