New Jersey – The Advocacy Life Podcast & Blog

Javier Robles Leeds covid-19 Memorial

Hello my friends, please allow me to welcome you back to another blog. In my last post, I highlighted a disability advocate named Bill Byrne. This week I want to honor another one. Mr. Javier Robles is a professor at Rutgers University and a fierce disability advocate. His work represents everything I as an advocate aspire to be.

Let me take a step back. We in the disability community always feared some sort of public emergency like Covid-19 because we knew the system was overloaded and pushed to the breaking point. Years before the public started wearing masks. My fellow individuals in group homes we’re worried about a shortage in personal protective equipment. Before the pandemic staff would wash gloves after using them because there weren’t enough for the individuals in day programs. I would go visit folks in nursing homes that had some sort of disability after having a stroke. Knowing full well they were too young to be placed there.

Mr. Robles decided to do something about it. He’s the leader of the Disability Action Committee (DAC) after the outbreak they published a report identifying all the gaps the policymakers and decision-makers overlooked. I will be sure to add it to the sources below for you to read for yourself.

Therefore encourage one another and build each other up, just as in fact you are doing.
1 Thessalonians 5:11 NIV

The world decided on its own that the COVID-19 emergency is over. Javier in late September spirited a memorial at the New Jersey state house for those of us who passed away along with our caregivers.

I still can’t believe I was chosen to represent the New Jersey Council on Developmental Disabilities (NJCDD) at this event. I don’t see myself as a great man. I try to stay humble. If you ask me, I didn’t deserve to be there. I was ignorant of the greater disability community. There was only one other boy with Cerebral Palsy that attended mainstream classes in my entire School district. When I was growing up my approach to life was so laid back that I am now ashamed of it. I knew of Mr. Robles’ work along with his colleagues. I even emailed him and his team on more than a few occasions. I had to fight just to enter college. This man has hundreds of students listening to him every week. The lesson I learned that day as if you see a problem coming, don’t complain about it, find a way to solve it. Thank you Javier for mentoring the next generation.

Sources:

NJ_DAC_Initial_Report Download

https://sas.rutgers.edu/news-a-events/news/newsroom/faculty/3399-javier-robles

https://www.mycentraljersey.com/story/news/state/2022/09/20/trenton-nj-disability-community-rally-covid/69495352007/

October 26, 2022

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 Month Download

Source

October 12, 2022

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/

July 13, 2022

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_Report Download

June 15, 2022

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

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

Thank you for your response. ✨

April 13, 2022

Ensure Privacy for People with Disabilities

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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

Thank you for your response. ✨

March 16, 2022

Subconscious Genocide

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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