Category: Disability Awareness

  • Tales of Affection

    Tales of Affection

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  • Birthday Reflections & More

    Birthday Reflections & More

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  • The DSP World

    The DSP World

    I wanted to raise awareness to a very big problem in our world today. It rarely gets any publicity; the average person doesn’t even know about it. The truth is unless you are affected by this problem, you don’t even know it exists. The problem is the lack of pay and benefits for direct support professionals (DSPs). What is a DSP? A direct support professional is someone who is paid through a provider agency or an individual to provide support and care to a person with a disability. As long as there are people who need assistance in their lives there will always be need for these professionals. There are four groups of people who are affected by this issue. They are: the individuals receiving the care, the family of the individual, the providers, and the professionals themselves. 

    Let me begin by addressing the individuals receiving the care.  People that have a disability will learn that they often must depend on others to assist them in one way or another.  They depend on the kindness of others to help them live their day-to-day lives. Could you trust someone with your most intimate tasks if you knew they would leave in six months? Just imagine knowing you’re going to lose the person you most confide in, even before they start. People with disabilities can tell almost immediately if the person is going to be good at their job. Most of all they can tell if the person will last. 

    Use your imagination for this next part please. You meet a person named Matt. After meeting him for only four hours, you need a shower. He must first undress you completely. Then he puts you in a shower chair. He then proceeds to give you a shower. Matt does his best to wash your private areas. After finishing and drying you off, he begins to dress you. If the individual is so fortunate, he can direct Matt on how and what to do. The truth is there are many individuals in the disability community that cannot speak for themselves. Therefore, Matt must try to interpret what they are trying to communicate. This is just one of the many duties of a DSP. I hope this brief example can illustrate the need for these very special people. 

    Next, I would like to talk about the direct support professionals themselves.  These professionals receive about 10 to 11 dollars an hour with no promise of growth in their career. Most providers offer little to no benefits at all (this includes sick time or health insurance). As a result if DSPs don’t work, they aren’t paid. This leads to severe burnout. Many times, they sacrifice their own health and well-being to make sure they can provide for their family and/or pay their bills. It’s ironic that they are responsible for the health and well-being of another human when, due to the lack of health benefits such as sick days, they cannot take care of their own health needs. What inevitably happens is the person leaves to another company in hopes of a dollar more. People believe they can use this job as a steppingstone toward a larger career goal. The other misconception is this job will only be a temporary solution until another opportunity opens up. They end up living paycheck to paycheck. The professional waits in limbo until they burn out or they get another job. 

    So why would someone do this job at all? These wonderful people do it because they care for others. They look forward to the moments when their individual lights up when they arrive in the morning for their shift. The relationship between an individual and the professional is truly symbiotic if done correctly. The individual gets a companion to help them with their wants and needs. In turn the professional should receive joy in the knowledge they are doing something to help someone live their life. Some things are worth more than money. It is truly heartbreaking when it is time for the professional to move on. The best way I know to describe this feeling for an individual, it’s like losing a loved one. For the professional, they are left with the memories of a person that has worked their way into their hearts. 

    The family and/or parents of an individual can also be affected by the DSP issue. Try to imagine having a 25-year-old son that you have cared for his entire life. One day someone shows up at your door ready to take him out to the park for the day. You as the parent are told almost nothing about the person who will be supporting your child for the rest of the day. By the same token, the professional knows almost nothing about the individual and the family they will be supporting. Most times both parties are just given a name with a brief description. A relationship of trust has to be formed out of thin air. This sadly is one of the best-case scenarios. Most individuals as they get older lose their family and the professional becomes, by default, their brother, mother, etc. Depending on the individual’s disability, they will rely on their “families” in almost every way. They need an advocate, a caregiver, and a friend. Could you imagine learning to give your complete trust to a stranger every six months? 

    The final group of people that are affected by the DSP issue are the provider agencies. The turnover rate in this industry is incredibly high. Providers cannot keep their staff. They spend money training these professionals and then they quit a few months later. The money is lost. The rates for these staff and providers have not been increased in approximately 10 years. For example if the state allows $15 per hour to a provider, and $10 goes towards the DSP, that leaves the provider with only five dollars to spend subsequent overhead, including important items like gloves and vehicle maintenance. The providers cannot give their staff benefits or raises if they are barely able to keep themselves above water. 

    The direct support professional problem in my humble opinion has reached crisis levels not just statewide but nationally as well. As long as there are people, people will always need care.  This industry is not going away any time soon. The system will never be perfect but something needs to be done now. This needs to be a call to action. We need to contact our state and federal officials to educate them on this very real problem. If we don’t act now people with disabilities may not have people around us to help us live our lives. 

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  • A Prayer for all

    A Prayer for all

    Description

    In the third episode of season 3, Kevin does a prayer and a blessing for anyone who needs it. This is a deeply personal look at the spiritual life of a person with a disability. If this topic interests you, please share and subscribe.

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  • The Good Fight: A poem

    The Good Fight: A poem

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  • The Kennedy Family & Disabled Americans

    The Kennedy Family & Disabled Americans

    “A snake pit, where they live in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo.”

    Robert Kennedy Senior made this statement when he was visiting Willowbrook in 1965.

    Willowbrook State School was a state-supported institution for children with intellectual disabilities. Designed to accommodate 4,000 children, by 1965, Willowbrook had a population of 6,000, and a scandal soon erupted over news of the institution’s horrendous conditions and questionable medical practices. It was not closed for another 2 years despite all the outrage. Would you want your child to live in these conditions?

    Disability does not have a political party. A disability does not have a skin color or a specific ethnic race. Disability is America. The only two things certain in this world are death and disability. What makes America great is that we learn from our past so we don’t repeat the mistakes we have made. Disability is not waste, fraud, or abuse. Disability is an example of Hope and prosperity in the American dream. The American Disability community is an example of living prosperity and endurance.

    It’s hard to pinpoint the exact birth of the disability rights movement because disability has been around since the beginning of time, and it will be there until the end of days. America was introduced to the harsh reality of abuse through Robert Kennedy Sr.’s poignant account. Devoid of proper respect and support. Our community faces suffering and death. An autism diagnosis is not evil or a death sentence. A wheelchair is not a confinement, but a tool for opulence.

    This is the current battle that disabled America is facing. We won’t stand for our brothers and sisters being locked up. We aim to help people live fulfilling lives. In the land of the free and the brave, we uphold truth, justice, and the American way as a testament to our identity. Living with a disability presents many challenges. While that’s a fact, things worth pursuing are rarely simple.

    “We choose to do these things not because they’re easy, but because they’re hard.”

    President John F Kennedy made this statement when referring to reaching the Moon in a decade. We have the same privilege to reach for the same stars as anyone else. In America, we do not fear challenges; we embrace them so we can grow. America today is making choices out of fear and misunderstanding. I believe in America, I believe in its people. We still have time to change course. To see value in all of us. Our chosen elected officials need to listen to us.

    '“ Do not seek revenge or bear a grudge against anyone among your people, but love your neighbor as yourself. I am the Lord. 'Leviticus 19:18

    “I don’t think people should take medical advice from me.’

    This statement was made by Robert Kennedy Jr. The current Secretary of Health and Human Services. There will always be misconceptions around disability and our healthcare. However, if we are left out of the conversation, we cannot help the country move forward. The current administration and the disability community cannot be enemies, we must be allies to achieve tomorrow’s victories. Without disability, America will fail because we are America.

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  • Sleepless wiithout Medicaid

    Sleepless wiithout Medicaid

    When I’m writing, a debate is going on at 1:00 in the morning on the current administration’s reconciliation bill. This is America’s future.. I am not a liberal. I love the Democratic process. Where the people we elect, those whom we choose to trust, are supposed to have our best interests in mind. I will not post this until Thursday afternoon. By then, we will know what happened. I want people to understand how those with disabilities will be affected, at least one person.

    The Medicaid program will receive drastic cuts. I’m going to tell you exactly how these cuts would affect my family directly. I acknowledge and understand that I am blessed and fortunate because of my efforts in the advocacy world. I want you to think about others who are not so fortunate. I’ve seen the models that are predicted, at a minimum of 10%. These cuts are like a square peg in a round hole. It doesn’t work! I receive Home and Community-Based Services (HCBS) under a waiver program in New Jersey State Medicaid. This program is legally optional in every state, meaning this will be the first thing to go.

    Matthew 25:40 NIV “The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’

    • My $60,000 accessible vehicle receives annual servicing to ensure optimal performance. I primarily use this for transportation. For doctor’s appointments and other important engagements. It also helps me avoid becoming a social isolate. The mechanic can fix the motor, but not the lift for the van. This is factual, not fraudulent.
    • I’m currently allowed to go on respites, which gives my father and other family members who assist with my daily care a necessary break so they don’t become burned out or heal if they’re sick. Keeping people in the community is demonstrably cheaper than institutional care. This is how you can prevent waste.
    • Once a week, I receive physical therapy at home to make sure my body does not deteriorate. I could get a prescription from my doctor, it covers approximately 8 weeks of physical therapy. What would happen to your body if you only exercised 8 weeks out of the 52-week year? Not to mention that my father would have to drive me to a facility to do this, putting more mileage on our vehicle.
    • My $50,000 wheelchair is due to be replaced. How much is it going to cost the taxpayers now? This is not abuse, this is necessary accommodation. Should I stay in bed and waste away? If people want those with disabilities dead, why don’t they have the guts to say it?
    • If there’s no oversight, each state will have its own unique Medicaid and Medicare program. I come from a great family, although geographically dispersed. If I have to move, my systemic quality of life would be very different. If I didn’t have a family, I would go into a facility and slowly die. We saw this happen in the mid-80s when Geraldo Rivera first exposed it, and we saw it happen again during the outbreak of the pandemic. It was my understanding did America was supposed to be great for all.
    • With Medicaid, I can entertain job offers and job coaching services. I guess my money is not good enough for the economy.

    My fellow Americans, individuals with disabilities, we are not a terrorist organization. We want to help our nation grow, not hurt it. Is this what you want to hurt your neighbors, your family, and your friends? How will you be able to sleep when all these changes roll out? Have a good night, and may God bless America.

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  • Early Access

    Early Access

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  • Disability Misconceptions

    Disability Misconceptions

    Every now and then, I get frustrated—not because I’m angry at individuals, but because there’s still so much misunderstanding about disability. What seems straightforward to me often isn’t to others. So, instead of stewing about it, I’ve decided to put together a list of things that I hope will help educate and shift perspectives.

    Luke 6:31 NIV 31 Do to others as you would have them do to you.

    1. Not All Disabilities Are the Same

    We say “everyone is different,” yet so often people treat disability like a one-size-fits-all label. You could line up ten people with the same medical diagnosis, and each one would be affected in a completely different way. Needs, goals, and abilities vary from person to person. What someone can or can’t do depends on a mix of their individual abilities, the support they receive, and the resources available to them.

    2. We’re Not Here to Inspire You—Just to Be Your Equal

    It shouldn’t be “inspirational” just to see someone with a disability walking down the street. And yet, when we live independently—with the right support—people often question it. Why? We’re just living our lives like anyone else. We want to be treated as equals, not exceptions.

    3. Be Flexible

    Life doesn’t always go to plan for anyone—and that includes those of us with disabilities. Flexibility, patience, and understanding go a long way when you interact with us. A rigid mindset helps no one.

    4. Hollywood Gets It Wrong—A Lot

    Movies often miss the mark when it comes to portraying disability. Sure, actors like Tom Hanks and Cuba Gooding Jr. have received awards for their roles, but their performances don’t always reflect reality. Times have changed, and so have our perspectives. It’s important to remember that what you see on screen is entertainment—not education.

    5. Ask Questions—Just Be Respectful

    Curiosity is fine. But respect is essential. If it’s something you wouldn’t want to be asked or called, don’t say it to someone else—disability or not.

    6. Disability Doesn’t Discriminate

    It doesn’t care about your skin color, background, or bank account. Anyone can be affected. And just because something is written in a study online doesn’t mean it reflects the lived reality of everyone.

    7. We Get Tired Too

    Yes, everyone gets tired. But for many people with disabilities, there’s no “clocking out” at the end of the day. The challenges don’t stop at 5 p.m. Sometimes you just don’t want to use the wheelchair or the communication device. And speaking of that—imagine how exhausting it is trying to communicate when you can’t speak.

    8. Laugh With Us, Not At Us

    Humor is powerful—and we love to laugh! But make sure you’re laughing with us, not at us. That small shift makes all the difference.

    9. Don’t Pity Us—Just See Us

    We know life isn’t easy. But we’re doing our best, just like you are. We don’t need pity. We need understanding, support, and a fair shot.


    I know this list isn’t revolutionary, and it might not be the most eloquent thing you’ll ever read. But I’ve kept it simple for a reason: clarity helps change hearts. Maybe someone will print this out and stick it on the fridge. Maybe the next time they meet someone with a disability, they’ll see the person—not just the label.

    Thanks for reading. Be kind. Be curious. Be human. Good night, friends.

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  • Access to Freedom

    Access to Freedom

    Assemblyman Carol Murphy and members of the Health Committee:

    My name is Kevin Nunez.  I am a disability advocate. I also belong to a number of advocacy groups, and I am a Governor Appointee to the NJ Council on Developmental Disabilities.

    I’m honored to come before you today as one of the approximately 200,000 individuals with disabilities who receive some sort of Medicaid assistance. The Medicaid program is not only a “safety net.” It is much more.  It is a “lifeline.” Medicaid is the key to unlocking access to my community, to my purpose, and my freedom as a human being. Any cuts or caps to the Medicaid program will bring about immeasurable harm to the most vulnerable population across the beautiful Garden State.

    According to the New Jersey Council on Developmental Disabilities (NJCDD) statement on Protecting Medicaid:

    “Medicaid is a critical funding source for people with disabilities to receive safe and adequate care within their communities. Medicaid funds the vast majority of services and community-based supports for individuals with intellectual and developmental disabilities (I/DD). In fact, in order to receive any kind of services through the NJ Division of Developmental Disabilities, residents MUST be Medicaid-eligible. Far more than simply paying for visits to the doctor, Medicaid funding allows people with I/DD to access in-home supports; day programs; job coaching and employment support; respite services for their loved ones; physical, cognitive, and behavioral therapies; prescription drugs; medical equipment; and much more. In New Jersey, nearly 200,000 individuals with disabilities rely on Medicaid for healthcare and disability-related support services.”  

    My life and the lives of so many others mirror this statement. 

    Because of my physical disability, access to Medicaid has been critical.  Because of Medicaid, I can live in my home with my family since Medicaid funding has made my home accessible. Because of Medicaid, I can rely on trained support staff to come to my home and assist me with all personal care needs so that I can participate in daily activities.  Because of Medicaid, I am a healthy contributing member of my community and have accomplished more in the past 35 years that anyone thought was possible.  Medicaid saves lives by giving people with disabilities the opportunity to have a life that they chose and that meets their unique needs. Medicaid is a win-win. With Medicaid, folks with disabilities can have jobs, and the people supporting the individual also have jobs.  As I grow older, my needs will change. Medicaid allows flexibility and choice throughout our lifespan. 

    I cannot stress enough about how important stability is in our lives.  It is critical that we are not always worrying about tomorrow.  These past few months have been very concerning as we listen to policymakers talking about cuts to Medicaid and not knowing how that will impact our lives. 

    The Medicaid program must continue to provide stability and the level of necessary support so that we remain active, healthy, contributing members of society and not a burden to society. 

    I’ve seen models and predictions about what could happen if there was  just a 10% Medicaid cut. 

    I’m here to tell you, on a practical level, the ripple effects of any cut will be felt, not for 4 years but for generations to come. 

    In order for New Jersey to be fair and strong, we all need to do our part. 

    My message is: No cuts, no caps! 

    New Jersey’s future is in your hands right now.