The Advocacy Life Podcast & Blog

Tag: New Jersey

  • Who is Bill Byrne?

    Who is Bill Byrne?

    Quick question to all my readers, Do you know the name of your town mayor?  I’ve lived in the southern part of New Jersey for almost 15 years now and I have no idea who he or she is. I’ve been advocating for my disability community officially since September 2016. I just move on to the next meeting trying to speak for those who cannot speak for themselves. Advocates and disability allies never acknowledge the work we do. We just keep going. There is an international disability community, we all work together to ensure dignity and respect for all regardless of circumstance. The New Jersey Council on Developmental Disabilities (NJCDD) hosted their Community Building Awards An event that is held every few years to honor leaders in the disability population.

    Earlier this week I was left speechless When I met a real-life disability hero, Mr. Bill Byrne. I’m ashamed to say this but I did not grow up training or believing in disability rights. I had a very laid-back approach and let my parents do everything. I didn’t begin to discover my voice until well after I was 18. people like Mr. Byrne were rockstars to me. Everyone knows of Madonna and The Beatles for example. At least in New Jersey and in some national circles, That’s how people describe Bill to me. Here are some of his accolades:

    1. He is friends with Mayor Dorothy of Morristown, NJ. He regularly attends town council meetings.
    2. One of the biggest advocacy organizations used to be known as the Association for Retarded Citizens. Thanks to Mr. Byrne and his colleagues There now known as just The Arc.  
    3. He petitioned the New Jersey government to have the words idiot, insane, and retard removed from the state constitution In the early 2000s. 
    4. He sits on many state, local, and national boards.
    5. A proclamation was passed in his township that declared August 16th as Bill Byrne’s Day.

    Yes, I knew he was receiving the Colleen Frazier award for Self Advocacy from the NJCDD weeks before the event. I am the vice chair of the NJCDD to be transparent. (They’re not sponsoring this article or any work that I post on this website.)  It never occurred to me that I would see him there or sit at the same table as he did. I didn’t realize it until he came to shake my hand. This gentleman who had been raising awareness for disability issues since before I had braces talked to me like  I was the next-door neighbor that he had known for years. So often I get frustrated because my work is not good enough for my perfectionist standards. I know we can all relate to that. We are so focused on tangible results, that we forget about the personal touch. Bill has mastered the personal touch.

    “If I must boast, I will boast of the things that show my weakness. The God and Father of the Lord Jesus, who is to be praised forever, knows that I am not lying.”2 Corinthians 11:30‭-‬31 NIV

    This man who cannot read or write and I’m sure has been put down by others, was so humble and passionate. The first words he spoke when he got up to the podium were to praise and Thank God. As a new Christian, this was the first time I completely understood the mission! All his work meant nothing to him without God. Mr.  Byrne from one disability advocate to another, I thank you for showing me the way. You reminded me of what matters. I pray these words can help someone else. Thank you for reading I will see you next week.

    Sources:

    https://patch.com/new-jersey/morristown/bill-byrne-gets-his-day-in-the-sun

    Bill Byrne, champion of the ‘differently abled,’ to be honored by Morristown mayor and council
  • Supporting the Disability Workforce

    Supporting the Disability Workforce

    By Jesse Schwartzman

    month we celebrate October as National Disability Employment Awareness Month
    (NDEAM). NDEAM was declared by Congress in 1988 to spread awareness and the
    contributions of people with disabilities while at work. People in the disability community want to
    work and are ready to work now more than ever with small businesses, corporations, and our
    own government looking to hire workers. Work should always include equal pay for equal work.
    I am glad this month is here to bring awareness because there is still so much that needs to be
    done in NJ and across the country. As reported on page 12 of Advancing New Jersey’s
    Employment First Report, of the individuals receiving day and employment services from DDD,
    only 14% are in integrated employment services, which is the eighth lowest in the nation.
    Competitive integrated employment (CIE) is having people with disabilities earn the same pay
    as others without disabilities. It means those with disabilities can work where people without
    disabilities work. Across the country, the employment rate for adults with disabilities over the
    age of 25 is bleak. Among the population ages 25 to 54, around 36% of people with a disability
    were in the workforce, compared to 80% of those without a disability. For workers ages 65 and
    older, 7.3% with a disability were in the workforce, compared to 21.7% without a disability.
    Since the onset of the pandemic, now hiring signs are present at most businesses, and
    corporations are now not only making commercials to get consumers to buy their products, but
    they are also attempting to get consumers to work for them. According to a survey of 1,100
    businesses by Goldman Sachs 10,000 Small Business Voices, 90% of businesses that are
    hiring are finding it difficult to recruit qualified candidates for open positions. In March,
    employers advertised a record 11.5 million job openings. The United States now has two job
    openings for every unemployed person. The business community at large needs to work with
    the disability community so more job openings can be filled by individuals with disabilities.
    Common misconceptions such as believing every person with a disability needs a workplace
    accommodation, are false. According to a U.S. Chamber of Commerce study, only 14.5
    employees with disabilities request workplace accommodations. According to that same study,
    companies with the most inclusive workplaces for employees with disabilities experienced
    nearly 30% higher revenues and greater economic profits.
    In NJ work is being done to get more people with disabilities jobs. New Jersey Governor Phil
    Murphy, has signed four bills that should improve the employment rate for people with
    disabilities in NJ. S3455 Revises eligibility requirements for NJ Workability Program and
    Personal Assistance Services Program. This means individuals with disabilities on Medicaid can
    continue to receive services while starting or continuing to work without an income cap or age
    cap. Bill S1937 signed by the Governor in 2021 establishes a task force to promote employment
    by state agencies for people with disabilities, Bill A5294 signed by the Governor this year,
    provides fast-track hiring and advancement employment opportunities by the state for persons
    with significant disabilities. Lastly, Bill A5296 signed by the Governor this year provides for
    employment by the state of certain persons with disabilities. All four have yet to be implemented
    and we hope that Governor Murphy’s administration gets to work on the legislation.

    October is National Disability Employment Awareness MonthDownload

    Source

  • The History and Future of Disability Pride

    The History and Future of Disability Pride

    As Americans, there are certain days we all recognize when we look at our calendars. Independence Day, Labor Day, Memorial Day, and Martin Luther King Day.  future generations of students will be taught about Barack Obama and Juneteenth. We have such a rich history to learn from and be proud of. However, there is a particular group of heroes that have been neglected. The time has come to acknowledge what they have done and call a new generation of advocates into action.

    Rosa Parks and Jackie Robinson are names every person in this country knows. Unless you have a disability, names like Judy Heumann, Brad Lomax, and Katie Cole are foreign to you. These proud patriots are some of the leaders of the protest that has come to be known as the 504 Sit-in.  Starting April 5, 1977, approximately 150 individuals with various disabilities occupied the Office of the U.S. Department of Health, Education, and Welfare in San Francisco for 28 days.  To require enforcement of The Rehabilitation Act that was signed into law a few years earlier. For nearly a month these brave people risked their lives. Going without medication and personal care. You would think after such an effort You would see change begin to happen, but it took 13 years to see any tangible evidence of equality.

    Blessed are the peacemakers, for they will be called children of God.
Matthew 5:9 NIV

    Let’s talk about July 26, 1990. Without using Google most of the population are unaware that this is the day the Americans with Disabilities Act (ADA) was passed. This legislation means much more than handlebars in the bathrooms and curb cuts on sidewalks. It guaranteed civil rights for individuals with disabilities. There is a misconception that because of this law All the problems of the disability community are solved. Earlier this week the Department of Justice filed a lawsuit against the Chicago Cubs and Wrigley Field for significant violations after a multi-year renovation project. How long must we remain an afterthought?

     In the mid-1980s journalist, Geraldo Rivera did a series of stories exposing the horrific treatment of individuals in Developmental Centers.  Earlier this year a nursing home in Sussex County New Jersey made national headlines for having our most vulnerable citizens in inhumane conditions leading to death and malnourishment. Over 200 humans were locked away without committing any crime and deprived of due process. I love this country and I am a proud American but advocates like myself Can no longer stand by while we sponsor second-class citizenship. That is not in the Constitution I studied.

    Did you know that there is a disability pride flag? The colors are a separate concept from the rainbow flag identified with the LGBTQ community. The five colors represent the different needs and experiences of the individual. Mental Illness, Intellectual and Developmental Disabilities, Invisible and Undiagnosed Disabilities, Physical Disabilities, and Sensory Disabilities. The month of July is known as disability pride month, but what exactly is disability pride? I was asked this question a few days ago, and this was my answer. “Disability pride is loving and accepting yourself, even though the world will not.” 

    Ken Capone leads the charge to end sub-minimum wage in segregated workshops. In the year 2022, they are still legal.  Emily Voorde is a female with a disability. She is the Associate Director for Disability Community Engagement in the White House. Their tireless efforts are never seen.  New Jersey has its own coalition of heroes.  Keith Jones is a disability activist, award-winning author, and former presidential candidate. Project Freedom helps individuals obtain accessible housing. Their founder Norman Smith has a disability.

    The inscription on the Statue of Liberty reads “”Give me your tired, your poor, Your huddled masses yearning to breathe free, The wretched refuse of your teeming shore.””  This was written in 1883 139 years later and people like myself Can’t read it, because of all those steps. 

    The next generation of disability advocates must not rest. We need to rise up and continue the work that has been laid before us. In January of 2022, Governor Murphy signed a law updating New Jersey’s WorkAbility program, as of July of the same year the legislation is still not implemented. With these updates, Disabled New Jersey residents would be able to earn a competitive wage, pay taxes, and keep their health benefits. By entering the workforce people who can work can support those with more complex medical needs. If we invest in more medical group homes we can avoid tragedies like the one mentioned above. This would create more jobs for caregivers and relieve stress on the overwhelmed disability care system. On the national level, We must end the marriage penalty and raise the $2,000 asset limit set in 1983. America cannot become the land of opportunity until all Americans have a chance to thrive.

    Note: every advocate mentioned Is very well known. It is very easy to learn more about them if you just take the time

  • July is Disability Pride Month

    July is Disability Pride Month

    By Jesse Schwartzman

    The following statement and subsequent article are written and produced by Jesse Schwartzman He is a tremendous disability advocate who formerly worked on Governor Philip Murphy’s reelection campaign in New Jersey I hope you all enjoy his fresh perspective.

    Progress has been made but it is not enough. We are at least 15 percent of the population but do you see people with disabilities integrated into society?
    It is time to uplift voices and bring our own seats to the table.
    Look to your left and your right disability can be hidden and happen anytime.
    The intersectionality is insane.
    Be kind to everyone, especially yourself.
    Do your best and improve at least 1 percent each and every day.

    https://njcdd.org/personal-touch-and-why-it-matters/
  • 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.

    Advancing_New_Jerseys_Employment_First_Full_ReportDownload
  • New advocate in Washington DC

    New advocate in Washington DC

    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

    Biden Names Picks To Serve On Disability Committee

    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/

    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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  • Ensure Privacy for People with Disabilities

    Ensure Privacy for People with Disabilities

    The following was written as an Op-Ed advocate for pending legislation in New Jersey in February 2022. Hope you enjoy and have a good day

     My name is Kevin G. Nuñez I am a thirty-four-year-old Puerto Rican male living with Cerebral Palsy. Ensuring and protecting the rights of people with disabilities is what  I have been doing my entire life.  I immigrated with my family to New Jersey at the age of four. Due to the nature of my disability, I use a wheelchair as my primary tool to live my life.  I have my daily struggles to overcome and try to live my life the best way I can. I need to use this platform to bring attention to an issue that does not enter the public consciousness when it comes to the disability population.

    Like most individuals with disabilities, I use the assistance of a Direct Support Professional (DSP) with my personal needs daily.  When I want to visit my family, I must take a three-hour and twenty-five-minute flight. Despite what Hollywood movies might have you think, the bathroom on the plane is not large enough to fit two people, or even one person using a wheelchair.  After I use the restroom at the airport, I am the first person to board the plane. I do not move for the duration of the flight.  Finally, I am the very last person to get off the plane. I can guarantee you it is not comfortable at all. By the time everyone gathers their belongings and gets off the plane another thirty-five to forty-five minutes has gone by.

     At this point, Mother Nature has my full attention. When I get to the next accessible bathroom, there is always someone in the handicap stall; peacefully stretching their legs in a space they don’t need to be using because they don’t have a disability. This leaves me with two options.  The first is to wait until they’re done and at best get a halfhearted apology. My second choice, I am forced to relieve myself in the corner of the restroom by exposing myself and urinating into a  plastic urinal bottle. Females with disabilities do not have the same luxury.

    Thanks to Assemblywoman Carol Murphy a Bill was introduced that requires business owners to put up signs on these specific bathroom stalls to discourage people from using them inappropriately. Provided there is more than one stall.  The Accessible Restrooms Sign Bill (A467/S1239) Needs to be made a priority, This is a human rights issue! It has gained bipartisan support. We are still awaiting committee review in the New Jersey state legislature. This legislation secures dignity and respect in this private moment that all humans should have.

    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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  • Subconscious Genocide

    Subconscious Genocide

    Hello once again, I hope your Wednesday is going well. The reason I wanted to wait till March to relaunch my blog is that March is known as disability awareness month in the United States. It’s usually seen as a celebration of how far our community has come in the last few years. I want to use this opportunity and this platform to bring attention to those of us that have been forgotten. Not everyone can post on Instagram or come up with a fancy new hashtag. Those of us who can speak must stand for those who have no voice.

    A few weeks back in a nursing home In Sussex County New Jersey Just under 200 individuals with various disabilities were found locked away in horrible conditions. According to reports linked below, countless rooms smell like urine and feces. By the time most of you are reading this the world is probably moved on to the next story and lawsuits have already been filed what about the people themselves? What are their stories? Has their suffering ended or did they just get transferred from the facility where they’re still going to be abused? I know the system is overwhelmed and understaffed but that said the reason why this happened. Instead of Googling the latest TikTok craze, I asked that you take a few minutes to investigate this. This is not an isolated incident. I think what hurts the most, is that this situation keeps recurring. The coronavirus pulled back the curtain on this horror show.

    Generalizing something like this happens, when an individual with an intellectual disability suffers a stroke. They do not recover fully and because the system does not have enough medical group homes They are forced into these programs that cannot meet their needs accordingly. Having a disability is not equal to aging.  I once knew a man who went through this exact scenario at 55. participants from his day program were the only visitors. I am saddened to say he’s no longer with us. I believe he didn’t make it to his 60th birthday. This took place years before there was a global pandemic. Who you think anyone went to his funeral?

    “Blessed are the merciful, for they will be shown mercy. Blessed are the pure in heart, for they will see God.” Matthew 5:7‭-‬8 NIV

    There are plenty of systemic issues because the system is not centered on the person It’s focused on protecting itself from lawsuits and avoiding blame at all costs. The human service industry In its entirety at a given point took on its own life force. It has become a runaway train coasting down the track. What can we do to stop it? I don’t have the answer to that but I can tell you we need to focus on the little things. There’s no reason why the staff cannot take the clients out on a walk. I’m not exaggerating, read the articles for yourself. 

    The reason why this subject hits so close to home is, I know If it wasn’t for my family This could have been me. Imagine going to bed but never being able to get out of it. We don’t see value in people with disabilities. I tried to think of a creative comparison, It’s not like prison because they have committed no crime. It is different from slavery because no one is benefiting from their silent pain. We have created a subconscious genocide by ignoring those who need us the most. Wake of America!

    Source Material:

    https://www.nj.com/news/2022/02/nearly-200-people-are-locked-down-living-in-inhumane-conditions-at-nj-nursing-home-advocate-says.html

    https://www.nj.com/news/2022/02/residents-lives-at-extreme-risk-feds-say-as-they-threaten-to-essentially-shut-down-troubled-nj-nursing-home.html

    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

    Subscribe
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    Thank you for your response. ✨