(201) 996-9100 Bergen / (201) 533-4407 Hudson
URGENT: NJ State budget cuts for CILs

URGENT: NJ State budget cuts for CILs

URGENT:

NJ STATE BUDGET CUTS FOR CILs

Dear hipcil Friends,

The 12 New Jersey Centers for Independent Living (CILs), have lost their line-item funding from the state budget.  This decision represents a devastating setback to the disability community. The centers provide essential, life-changing services that enable individuals with disabilities to live independently, confidently, and with dignity. Serving all 21 New Jersey counties, the CILs provided over 102,000 consumer services last year alone, demonstrating their far-reaching impact. For decades, CILs have been a cornerstone of support, offering programs and resources that improve quality of life, foster self-sufficiency, and nurture inclusivity.

 While it is understandable that the state is facing financial pressures and preparing for potential federal funding cuts, it is profoundly disheartening and unacceptable that these budgetary constraints have come at the expense of some of our most vulnerable community members. Disabled individuals often encounter countless barriers in their day-to-day lives, and CILs have been a critical force in breaking down those barriers and championing their rights.

 Moreover, eliminating funding for CILs is not a cost-effective decision for the state of New Jersey, especially in light of the potential federal funding cuts.

 The services provided by CILs not only empower individuals with disabilities but also generate significant cost savings for the state. By enabling individuals to live independently and reducing their reliance on institutional care or other more expensive state-funded programs, CILs help alleviate financial burdens on the state budget. Cutting this funding will ultimately lead to higher long-term costs for New Jersey, making it a shortsighted decision.

 The impact of this funding loss extends far beyond the centers themselves.

 It directly affects disabled CIL employees, thousands of individuals and families who depend on these services for their independence and well-being. Many of these individuals face unique challenges that cannot be adequately addressed without the comprehensive support and advocacy that CILs provide. From accessible housing, assistive technology and employment assistance to education, case management and community integration, the services offered by CILs are irreplaceable.

 Despite this setback, we remain hopeful and determined. Solutions must be found to restore this critical funding and ensure the survival of our centers. The centers are more than just service providers; they are lifelines, safe spaces, and sources of empowerment. They play a vital role in creating a more inclusive society where individuals can thrive.

 We urge community members and consumer advocates to come together and fight for the reinstatement of this funding.  Please contact your local NJ legislative offices and voice your concerns, “Restore State funding for the Centers for Independent Living”. The future of thousands depends on it. The work we do at the 12 New Jersey Centers for Independent Living is too important to abandon, and we are committed to the empowerment for individuals with disabilities and their families.

 Sincerely,

 Marily Gonzalez-Escobar

URGENTE:
RECORTES AL PRESUPUESTO

DEL ESTADO DE NUEVA JERSEY

PARA LOS CILs

Estimados amigos,

Nos dirigimos a ustedes con profundo pesar, ya que los 12 Centros de Vida Independiente (CILs) de Nueva Jersey han perdido su financiamiento asignado en el presupuesto estatal. Esta decisión representa un retroceso devastador para la comunidad de personas con discapacidades, afectando no solo a los centros en sí, sino también a los miles de individuos que dependen de ellos para vivir con independencia, dignidad y una mejor calidad de vida.

Los CILs, que sirven los 21 condados de Nueva Jersey, brindaron más de 102,000 servicios a consumidores solo el año pasado, demostrando el impacto profundo de nuestro trabajo. Durante décadas, hemos sido un pilar de apoyo para las personas con discapacidades, ofreciendo programas y recursos que fomentan la autosuficiencia, la inclusión y el empoderamiento. Los servicios que ofrecen los CILs van desde vivienda accesible y tecnología asistiva hasta asistencia laboral, educación, manejo de casos e integración comunitaria, todos servicios que son indispensables para muchos en nuestra comunidad.

Si bien comprendemos los desafíos financieros que enfrenta el estado y la posibilidad de recortes en los fondos federales, es profundamente doloroso e inaceptable que estas restricciones presupuestarias vengan a expensas de algunos de nuestros ciudadanos más vulnerables. Las personas con discapacidades ya enfrentan numerosas barreras para la independencia, y los CILs han sido una fuerza fundamental para derribar esos obstáculos, abogar por sus derechos y ayudarlos a vivir con confianza en la sociedad.

Además, eliminar el financiamiento para los CILs no es una decisión costo-efectiva para Nueva Jersey. Al permitir que las personas vivan de manera independiente y reducir su dependencia del cuidado institucional o de otros programas estatales más costosos, los CILs generan ahorros significativos para el estado. Recortar este financiamiento llevará a costos a largo plazo mucho mayores, lo que hace que esta decisión sea corta de miras y perjudicial.

Las consecuencias de esta pérdida de financiamiento van más allá de los centros en sí. Afecta directamente a los empleados discapacitados de los CILs, así como a los miles de individuos y familias que dependen de nuestros servicios para su independencia y bienestar. Son personas que enfrentan desafíos únicos que no pueden ser adecuadamente atendidos sin el apoyo integral, la defensa y los recursos que los CILs brindan.

A pesar de este revés, seguimos siendo optimistas y decididos. Debemos encontrar soluciones para restaurar este financiamiento crucial y asegurar que nuestros centros puedan continuar con el trabajo vital que realizamos. Los CILs no solo son proveedores de servicios; son salvavidas, espacios seguros y fuentes de empoderamiento. Ayudamos a crear una sociedad más inclusiva donde todas las personas tengan la oportunidad de prosperar.

Les pedimos que se unan a nosotros en la defensa para reinstaurar este financiamiento. Comuníquese con las oficinas legislativas locales de NJ y exprese su preocupación: “Restaurar el financiamiento estatal para los Centros de Vida Independiente.” El futuro de miles de personas y sus familias depende de ello. El trabajo que realizamos es demasiado importante para abandonarlo, y estamos comprometidos con nuestra misión de empoderar a las personas con discapacidades.

Gracias por su apoyo.

Atentamente,

New Jersey State Legislature

SENATE BUDGET AND APPROPRIATIONS COMMITTEE

Paul A. Sarlo (D),
36th District (Parts of Bergen and Passaic), Chair,
Email:  sensarlo@njleg.org,
Tel: 201-804-8118

Linda R. Greenstein (D),
14th District (Parts of Mercer and Middlesex), Vice-Chair,
Email:  sengreenstein@njleg.org,
Tel: 609-395-9911

Carmen F. Amato, Jr (R),
9th District (Part of Ocean),
Email:  senamato@njleg.org,
Tel: 609-693-6700

Renee C. Burgess (D),
28th District (Parts of Essex and Union),
Email:  senburgess@njleg.org,
Tel: 862-231-6577

John J. Burzichelli (D),
3rd District (All of Salem and parts of Cumberland and Gloucester),
Email:  asmburzichelli@njleg.org,
Tel: 856-226-3530

Nilsa I. Cruz-Perez (D),
5th District (Parts of Camden and Gloucester),
Email:  sencruzperez@njleg.org
,
Tel: 856-541-1251

Patrick J. Diegnan, Jr (D),
18th District (Part of Middlesex),
Email:  sendiegnan@njleg.org,
Tel: 908-757-1677

Gordon M. Johnson (D),
37th District (Part of Bergen),
Email:  sengordon@njleg.org,
Tel: 201-308-7060

Declan J. O’Scanlon, Jr (R),
13th District (Part of Monmouth),
Email:  senoscanlon@njleg.org,
Tel: 732-444-1838

M. Teresa Ruiz (D),
29th District (Parts of Essex and Hudson),
Email:  senruiz@njleg.org,
Tel: 973-484-1000

Douglas J. Steinhardt (R),
23rd District (Parts of Hunterdon, Somerset and Warren),
Email:  sensteinhardt@njleg.org,
Tel: 908-835-0552

Michael L. Testa Jr (R),
1st District (All of Cape May and parts of Atlantic and Cumberland),
Email:  sentesta@njleg.org,
Tel:  609-778-2012

Andrew Zwicker (D),
16th District (Parts of Hunterdon, Mercer, Middlesex and Somerset),
Email:  senzwicker@njleg.org,
Tel:  908-308-8672

GENERAL ASSEMBLY BUDGET COMMITTEE

Eliana Pintor Marin (D),
29th District (Part of Essex), Chair,
Email:  aswpintormarin@njleg.org,
Tel:  973-589-0713

Benjie E. Wimberly (D),
35th District (Parts of Bergen and Passaic), Vice-Chair,
Email:  
asmwimberly@njleg.org,
Tel:  
973-925-7061

Al Barlas (R),
40th District (Parts of Bergen, Essex and Passaic),
Email:  asmbarlas@njleg.org,
Tel:  973-237-1362

Herb Conaway, Jr (D),
7th District (Part of Burlington),
Email:  asmconaway@njleg.org,
Tel:  856-461-3997

Aura K. Dunn (R),
25th District (Parts of Morris and Passaic),
Email:  
aswdunn@njleg.org,
Tel:  973-206-1876

Roy Freiman (D),
16th District (Parts of Hunterdon, Mercer, Middlesex and Somerset),
Email:  asmfreiman@njleg.org,
Tel:  908-829-4191

Nancy F. Munoz (R),
21st District (Parts of Middlesex, Morris, Somerset and Union),
Email:  aswmunoz@njleg.org,
Tel:  908-918-0414

Carol A. Murphy (D),
7th District (Part of Burlington),
Email:  aswmurphy@njleg.org,
Tel:  856-242-2018

Ellen J. Park (D),
37th District (Part of Bergen),
Email:  aswpark@njleg.org,
Tel:  201-308-7062

Verlina Reynolds-Jackson (D),
15th District (Parts of Hunterdon and Mercer),
Email:  aswreynoldsjackson@njleg.org,
Tel:  609-571-9638

Gabriel Rodriguez (D),
33rd District (Part of Hudson),
Email:  asmrodriguez@njleg.org,
Tel:  201-223-4247

Brian E. Rumpf (R),
9th District (Part of Ocean),
Email:  asmrumpf@njleg.org,
Tel:  609-693-6700

Gary S. Schaer (D),
36th District (Parts of Bergen and Passaic),
Email:  asmschaer@njleg.org,
Tel:  973-249-3665

Gerry Scharfenberger (R),
13th District (Part of Monmouth),
Email:  asmscharfenberger@njleg.org,
Tel:  732-856-9294

Michael Venezia (D),
34th District (Part of Essex),
Email:  asmvenezia@njleg.org,
Tel:  973-450-0484

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Letter September 2024

Letter September 2024

To my colleagues and friends: 

As I approach my 50th year working under the recommendations and mandates of the Rehabilitation Act of 1973; as amended I feel the need to reflect on my service to ensure that people with disabilities were able to realize career dreams, enjoy the power to make informed choices about lifestyles and employment and to manage their lives independently under the mantra, “nothing about us without us”. 

I started my career working under Title I of the Act as a Vocational Rehabilitation Counselor crafting plans designed to lead to employment in jobs for which people with disabilities were eminently qualified. I moved on to manage the In-Service Training Program for the agency which not only renewed and replenished the skills of the VR Counselors, but we raised the education to a master’s level increasing the counseling staff skills to better serve the consumers. 

Moving on to the administrative level of DVRS I was able to affect policy and carry out programs through thoughtful funding and innovative programs that met the needs of an ever-evolving consumer population that demanded increased options and opportunities. My last 10 years with the agency were at the Executive level where I had the opportunity to see both sides of the organization and brought them together to best serve job seekers with disabilities. 

Finally, after leaving DVRS and joining the Independent Living movement I was able to revisit my enthusiasm about the excitement of seeing people with disabilities thrive in their communities. 

My goal for HIPCIL was always to strengthen services to the people of Hudson County and in the mid 1980’s I was able to convince the administration of DVRS to provide space in the Jersey City office to nurture a satellite program. Our founder Eileen Goff was able to skillfully apply to the US Department of Education’s Rehabilitation Services Administration (RSA) and secure the federal funds for a free-standing agency, Our Hudson County Unit was successfully thriving on its own. 

I retired from DVRS and was invited to apply to take over from Eileen to be the President/CEO of this great agency. Having been born and raised in Hudson County I recognized the unique needs of its citizens with disabilities. The needs of the citizens of both Hudson and Bergen Counties were shifting amid changing economic and ethnic demographics and I knew that both counties would benefit by combining staff members with specific skill sets and talents to be useful in both communities. I am happy to report that we have made great strides in staffing and have increased our ability to expand services.   

Earlier this year I proposed a succession plan to the Board of Trustees to gradually include Marily Gonzalez our VP/COO in more activities in Bergen in anticipation for her to take the reins and lead HIPCIL as the President/CEO beginning 10-1-2024. We will continue to maintain our presence in both counties. 

My transition will be to offer my services as a consultant.  As I reflect on a long and satisfying career in public service and the nonprofit world I plan to focus on my continued interest in disability services, policy and advocacy, age-friendly initiatives and college options for people with developmental disabilities though community college programs.  

While I can proudly look back on a fulfilling career, I will also anticipate the great things to come. Thank you for all the work that you do every day. 

 Sincerely,  

Brian Fitzgibbons 

Brian

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hipcilNews Summer/Fall 2024

hipcilNews Summer/Fall 2024

hipcil Newsletter Summer/Fall 2024

INDEX

From the Desk of the President:

Whether you venture to the beaches, the mountains or a local park the summer is a time for us to take advantage of the beautiful weather in New Jersey and enjoy the scenery. It’s a prime time for celebrations like July 4th which marks 248 years of our country’s independence, celebrating the Civil Rights legislation, marking the 34th anniversary of the signing of the Americans with Disabilities Act (ADA) and the growing popularity of July as Disability Pride Month.

Disability Pride Month gives us an opportunity to study the history of the Independent Living Movement and to honor pioneers like Ed Roberts, Wade Blank and Judy Heumann. Their activism and advocacy, which had roots in the earlier Civil Rights movement led to people with disabilities being viewed as empowered to make their own decisions, direct their care and lead independent lives. Congress responded in 1978 by amending the Rehabilitation Act of 1973 and establishing Centers for Independent Living with the philosophy summed up in the slogan, “Nothing About Us…Without Us”.

As I prepare to celebrate my 50th year working within the programs established by the Rehab Act I am impressed by the progress that we’ve made in areas of accessibility, informed decision making and the promotion of equitable and inclusive communities. As much as things have improved, we all have work to do to eliminate barriers and recognize that we can design the environment to accommodate everyone.

Brian Fitzgibbons

Summer Calendar Raffle

(with photos of Marceline and Cole choosing raffles)

This summer’s Calendar Raffle is flying by, with 5 winners each week! Everyone has been having a great time picking winners at the Bergen office every Friday. A few of us even had our kids in the office to grab winners from the bucket!

There’ll be many more winning tickets through the end of August! Thank you to all who participated by purchasing and/or selling tickets to support hipcil’s diverse programs.

My Battle with COVID: A Tale of Advocacy
By: Marianne Valls

Marianne is a longtime member of the hipcil community and is a frequent contributor to our newsletter.

It all began on a snowy day in March, long before a vaccine was available. I was born with cerebral palsy which results in “intention tremors,” a lack of hand coordination, and I walked with a walker. But on that Wednesday morning, my whole body shook!

I live quite independently, but fortunately that day my friends from work had stopped by. Seeing the health crisis I was having, they immediately called 911. It was later confirmed that I had contracted COVID. I spent quite a few months in the hospital and more time in rehabilitation. Not able to regain my mobility, I was given the option of going into a nursing home.

I treasured my independence and decided to come home. Surely, in the relaxed atmosphere of my own home, I would walk again. But the limited home therapy I was given was not sufficient to get back on my back on my feet. It appeared no one took into consideration my underlying disability (CP).

The lack of therapy led me to do research on my own. Although I was never given a diagnosis of “Long COVID,” I suspected that is what I had. I searched the internet looking for answers. Typing in the words “cerebral palsy and Long COVID” gave me few answers. The websites I found said nothing about paralysis and only emphasized problems with breathing.

My search for answers took more than a year. It appeared to me that the websites I found dealt primarily with children. I truly wondered if the medical community thought adults with CP no longer needed treatment.

I’ll admit I did not have a neurologist. What was the point? Until recently my CP never got in my way. I accepted tremors and my lack of hand coordination that made simple tasks difficult. Even a speech impediment never stopped me; I’d simply talked until I was understood.

But COVID changed all of that! I suddenly saw my cerebral palsy as a disease which was causing havoc with my body. The tremors, that had been with me since the day I was born, now appeared to be of earthquake portions. They were beyond my control, as they always had been, but now I am enraged and frustrated by them, I am impatient with those who cannot understand me, I am angry that I cannot get out of bed myself without help.

Finally, my doctor recommended Lutheran Senior Life. It has a whole wide range of services. I go to the center two times a week and I receive physical and occupational therapy. Although I have only been going there for a few weeks, I am taking few steps, I am still impatient with myself. I remind myself of a thousand clichés such as, “a journey begins with a thousand steps,” etc. As of now, none have worked.

This is not an essay about triumph, but about problem solving. It is about taking charge. The internet is a valuable research tool. In the past, I knew little about my cerebral palsy. It was a done deal! There was no cure, so I ignored it. But COVID made me realize how fragile my nervous system was. While I did not search for a cure, I searched for a way to regain my mobility. Life is not a fairy tale and sometimes there are no happy endings. However, life is a challenge, and it is an individual’s responsibility to maintain a healthy body to the best of one’s ability.

What To Expect When You’re Expecting a New Wheelchair.
by Blagica Jankuloska

Navigating the maze of getting a wheelchair approved by insurance can be a daunting experience, fraught with anxiety and uncertainty. For many, the necessity of a wheelchair is not a matter of convenience but a critical aspect of maintaining independence and quality of life. Yet, the bureaucratic hurdles, endless paperwork, and rigid criteria set by insurance companies often create a formidable barrier.

As a 37-year-old woman who relies on her wheelchair not only for work but also for various therapies and community activities, I can attest that the last few months have been anything but fun. The first step in this arduous process is having an honest conversation with your doctor about your current wheelchair experience, explaining why you need a change and how a new wheelchair will improve your quality of life. Next, reach out to your preferred wheelchair clinic. Keep in mind that some doctors are affiliated with specific clinics, which might simplify the process for you. When you reach out, you will most likely be put on a waiting list. I suggest that after you talk with your doctor, if they have a clinic in their office, you walk down that same day and submit your insurance and ID to get on the list as soon as possible.

After months of waiting, you will finally get a call to schedule your first of four clinic appointments. During my first appointment, I spent half an hour filling out basic demographic paperwork and answering numerous questions. We arrived an hour early due to an appointment time error, which turned out to be a blessing in disguise. After completing the paperwork, I met with the team that would assist me throughout the entire process. This team typically includes a physical therapist, a representative from your chosen wheelchair company—Numotion, in my case—and another team member responsible for ordering. They will ask many questions about your mobility level. Be honest. If you can’t do something, make sure they know. Remember, they are not there to judge but to help. Be proud of the things you can do and don’t let the evaluation upset you. At the end of the day, you are doing your best.

The next three appointments follow much of the same format. You go into the clinic, and they take measurements for various parts of the chair, starting at your backrest and moving down to your cushion, footplates, armrest, and more. They provide options to try, and you sit and stand multiple times, testing different configurations. Word of advice: try as many options as you can at the clinic and don’t settle. Keep in mind that the chair is an extension of your body, and it needs to be comfortable.

After all the pieces are selected, you might think the process is finished, but that is not the case. Two weeks after my clinic appointments were completed, Numotion called to set up an in-home visit so a technician could evaluate my home to ensure all relevant doorways are the right size for the new chair. While the appointment itself is quick, you might spend a significant part of your day waiting for the technician due to scheduling adjustments by the wheelchair company. I was fortunate to work with Rene, who has been familiar with my needs and home setup for many years. He advised me to share this with readers: “Make sure you like every piece of your chair and don’t let people make decisions for you since you are the one sitting in the chair for long hours, not anyone else.” I agree; remember, it’s your chair, your life, and your choice. The team will do its best to get everything approved as soon as possible, but at the end of the day, it’s a waiting game. Your independence and comfort are worth the wait. Speaking from experience, you will get there; just give it time.

Did You Know? …
(Contributed by Board of Trustees Member Dana Solomon)

• Nearly 1 million people in the U.S. are living with Parkinson’s Disease. This number is expected to rise to 1.2 million by 2030.
(Parkinson.org)

• ~70% of people living with Rheumatoid Arthritis are women, and 55% are older than 55 years.
(who.int – World Health Organization)

• ~2.1 million people in the US are living with Limb Loss, and that number is expected to double by 2050
(Accessprosthetics.com)

• 1 in every 691 babies in the U.S. is born with Down Syndrome, making it the most common chromosomal condition.
(dosomething.org)

• Almost 3 million U.S. adults have Epilepsy. ~456,000 U.S. children (0-17) have epilepsy.
(cdc.gov)

The Garden Club at A. Harry Moore School in Jersey City, NJ

From growing their own vegetables to learning the basic techniques of gardening, this program was able to teach the participants the plant life cycle, along with doing hands-on gardening activities after every discussion. Throughout this program, all the students were accommodated individually so that they were able to fully participate without any barriers. At the end of the program, recipes were taught to the participants so they can learn how to consume the vegetables grown.

Cooking Corner
Greek Orzo Salad

This Greek Orzo Salad recipe is a light and flavorful pasta salad that’s delicious as a side dish or main dish. It’d be perfect with anything you’re grilling this summer!

Ingredients:

  • 3 tbsp red wine vinegar

  • 2 tbsp fresh lemon juice

  • 1/3 cup olive oil

  • 1/2 tsp garlic powder

  • 1 tsp dried oregano

  • 1/2 tsp kosher salt

  • 16 oz orzo pasta, wheat or gluten-free

  • 1/2 cup halved pitted kalamata olives, plus 2 tablespoons brine

  • 1/3 cup red onion, diced small

  • 3 cups from 1 large English cucumber, diced small

  • 1 pint grape tomatoes, halved

  • 1 orange bell pepper, diced

  • 1/2 cup feta cheese, cubed

  • fresh oregano, optional garnish

Instructions:

  • Bring a large pot of salted water to a rolling boil. Add the orzo and cook according to package directions for al dente, adding an extra minute.
  • Drain and rinse under cold water, drain.
  • Meanwhile, in a large bowl, combine the dressing ingredients. Add the olives, red onion and brine from the olives and mix to combine.
  • Stir in the pasta with the cucumber, tomatoes and bell pepper and toss well. Taste for salt and adjust as needed.
  • Add the cheese just before it is ready to serve.

Nutrition:

Serving: 3 /4cup, Calories: 173 kcal, Carbohydrates: 24 g, Protein: 5 g, Fat: 6 g, Saturated Fat: 1 g, Cholesterol: 4 mg, Sodium: 112 mg, Fiber: 1.5 g, Sugar: 2 g

Yield: 16 servings Serving Size: 3 /4 cup

(Recipe courtesy of https://www.skinnytaste.com/greek-orzo-salad/)

New Voting Machine Demo!

Sign up to watch a demonstration of the new voting machines for the upcoming November election!

The Superintendent of Elections will demonstrate the voting process including the ballot marking device’s features, including contrast, zoom and the ATI equipment for the vision impaired.

The demo will take place on August 20th at 2pm at the Bergen hipcil office in Hackensack.

Call or email Jayne at the Bergen office at 201-996-9100 ext. 21 or jjacobs@hipcil.org to reserve your spot!

Check out this helpful resource guide for all NJ hospitals!

https://nj-hospitals.com/2024/

Voting with a Disability

From Disability Rights New Jersey…

Disability Rights New Jersey receives federal funding to educate people with disabilities about the importance of voting through the Protection and Advocacy for Voter Access (PAVA) program which ensures that every qualified person with a disability can vote on Election Day.

To achieve this goal, we meet with the Board of Elections to ensure that voters with disabilities have access to the political process. We ensure that polling places are accessible, we conduct voting rights presentations and outreach events to the disability community. We participate in REV UP NJ as well as collaborate with a variety of voting rights coalitions.

In addition, we coordinate with the developmental disabilities network and produce a voting resource guide “Voting, It’s Your Right” which explains the process of voting, how to educate yourself on candidates and how to cast an independent ballot. As a non-partisan agency, we do not endorse candidates, however Disability Rights New Jersey offers a free voter hotline to answer questions leading up to and on Election Day, in the event a voter has a question about voting or encounters an issue trying to vote.

Disability Rights NJ hosts a Voting Hotline:

You can call the hotline from 8 am-4 pm Mon-Fri or from 6 am to 8 pm on Election Day

(866) 493-0023 or email at voterhotline@disabilityrightsnj.org

hipcilThanks…

hipcil receives many contributions from individuals and the community throughout the year. We thank the following for their recent exceptional generosity:

  • Bergenfield Lions,
  • D. Baumann-Dasilva,
  • Gerry Galvin,
  • Mary Culver,
  • Jay Levine,
  • James Dougherty,
  • Mary Mulvaney,
  • Margaret Papageorgiou,
  • First Presbyterian Church of Hackensack,
  • Karate Cares, Inc.,
  • Richard Ryan,
  • Larry Bauer,
  • Betty Fetzer,
  • Network for Good,
  • Alice Ross,
  • Kaplen Foundation,
  • The Gonzalez Family in memory of Jose “Papu” Gonzalez

We Welcome the Following New and Renewing Members of for hipcil 2024

You can become a member of hipcil for 2024! For a membership form visit our website at www.hipcil.org/membership or call one of our offices!

  • Judith Assisi,
  • Rezenia Enedju,
  • Patricia Marie Fantin,
  • Valerie Frink,
  • Dorothy Genoni,
  • Alan & Lynn Gold,
  • Linda Horvath,
  • Robin July-Edwards,
  • Wendy Kelly,
  • Zoraida Krell,
  • Kris Mullins, New Bridge Medical Center +,
  • Ryan Roy,
  • Stefanie Thomas,
  • Cindy Zirkin,
  • CORPORATE +

Saying Goodbye…

Our hipcil family recently lost the following:

  • Sonya Burroughs,
  • Estela Cruz,
  • Doreen Kovach,
  • Queen Esther Walker,
  • Jose “Papu: Gonzalez

hipcilGala

Visit our events page at www.hipcil.org/hipcil-gala for all the details on our upcoming gala!

With Growing Demand, Yelp Adds Accessibility Details to Business Listings
by Shaun Heasley 

Yelp says it is dramatically increasing information about accessibility in listings on its site for restaurants and other locations, while also pushing businesses to become more inclusive.

The online business directory and review site said this week that it is adding eight new phrases that users can search for, all aimed at helping people with disabilities find places that meet their needs.

Yelp said it is also making updates to its website to enhance screen-reader navigation, improve color contrast and include alternative text descriptions generated by AI on photos. What’s more, the company is establishing an accessibility resource hub to help business owners learn how to better accommodate people with disabilities.

The changes being rolled out ahead of Disability Pride Month in July come as Yelp has seen a spike in demand for accessibility information. Between 2020 and 2023, searches for “wheelchair accessible” on the site grew 40%, Akhil Kuduvalli Ramesh, senior vice president of product at Yelp, said in a blog post this week.

“While ‘wheelchair accessible’ is among the most popular attributes on Yelp business pages, we recognize that accessibility needs vary for the more than 42 million Americans with disabilities,” he said. “These new attributes and resources are just part of our ongoing efforts to support the disability community. We look forward to continuing to prioritize this work as we focus on improving and maintaining a platform that empowers and supports individuals of all abilities.”

Yelp worked with the disability organizations Disability:IN, the American Association of People with Disabilities, Open to All and The Arc to make the enhancements.

In addition to “wheelchair accessible,” new search attributes on the site include “accessible parking near entrance,” “ADA-compliant main entrance,” “ADA-compliant restroom” and “no steps or stairs,” which indicates that these impediments are not present at the entrance or inside a business.

Users can also search for “ASL proficient,” signifying that at least one staff member is ASL proficient, or “closed captioning on TVs,” indicating that at least one television at a restaurant, food or nightlife establishment features closed captioning. Other search options include “Braille menus available” and “QR code menus available.”

The new attributes can be seen on business pages by clicking on the “accessibility” section, Yelp said. Business owners can add these details to their listings by editing their “Business Information” section.

(Article courtesy of www.disabilityscoop.com)

NHL in ASL’ Provides Unique Viewing Experience for Deaf, Hard of Hearing Fans
By William Douglas

@WDouglasNHL NHL.com Staff Writer

Noah Blankenship sat inside a studio in the NHL offices in Manhattan before Game 5 of the Stanley Cup Final on Tuesday pumped and ready to go.

“Control, are you ready?” Blankenship said in American Sign Language.

An emphatic “yes” came from members of a production crew that was more than primed and ready to get the latest broadcast of “NHL on ASL” on the air for deaf and hard of hearing fans.

The first of its kind broadcast, available on ESPN+ in the United States and Sportsnet+ in Canada, features deaf broadcasters providing real-time play-by-play coverage and color commentary of each game of the Final. The crew will be together again for Game 6 on Friday.

It’s the latest collaboration between the NHL and P-X-P, which has provided ASL interpretation for signature evens like the Winter Classic, Heritage Classic, NHL All-Star Weekend and Stadium Series, and Commissioner Gary Bettman’s State of the League address.

But this is an entirely different undertaking that’s been an on-the-fly learning experience for the broadcast’s deaf talent, which had almost no sportscasting experience previously, and for the NHL productions crew that had little experience working with studio analysts who don’t speak.

“We’ve essentially had to reinvent the wheel of it on production in terms of workflow,” said Rachel Segal, NHL vice president, social impact and strategic integration, and an “NHL in ASL” producer. “Usually the producer is in the talent’s ear relaying facts and figures through the night, ins and outs of commercials, timing updates.”

Instead, Matt Celli, vice president and coordinating director of NHL Productions and “NHL in ASL” director, relies on P-X-P founder and CEO Brice Christianson and Megan Thorp to interpret their directions to Blankenship and broadcast partner Jason Altmann.

“We had to insert our interpreters between the control room and the talent to relay both ways,” Segal said. “They’re not only signing what the control room is providing, notes for the talents, they are also interpreting back to the control room so that the producer and director can accurately depict on screen what the talent is talking about, and vice versa.”

The directions came fast and furious during the Oilers’ 5-3 win at the Panthers on Tuesday. Like a conductor with an orchestra, Celli, through Christianson, directed Blankenship and Altmann through a fast-paced segment highlighting each Edmonton goal from its 8-1 win in Game 4 on Saturday.

Celli and Ray Jacobs, senior coordinating producer for NHL Productions, alerted the on-air talent through Christianson when to bring in NHL referee Wes McCauley, who was in the studio Tuesday, to offer his take on penalties called during the game.

“You see the officiating team, you just let the game come to you,” McCauley said in response to a question by Altmann that was interpreted for him by Christianson. “Some nights there’s [conformity], and some nights, as we’ve seen tonight, the standard calls have been there, the crosschecking, slashing, interference.”

The studio broadcasters and directors also navigated a remote interview during the first intermission with Keivonn Woodard, a deaf youth hockey player from Bowie, Maryland, who received a 2023 Emmy Award nomination for his role in the HBO hit series “The Last of Us.”

“Over the course of the games we’ve made improvements and there’s more of a synergy,” said Altmann, who is P-X-P’s chief operating officer and is the third generation of his family to be deaf. “And we also have a fantastic production team with Ray Jacobs and Matt Celli that makes our job easier. The countdown, the pacing that leads to the promos, leads to the entire production. The first game was getting our groove … and over the course of Games 2, 3, 4, and now 5, we’ve gotten incrementally better.”

To the point that Blankenship and Altmann say they’ve developed a rapport inside and outside the studio.

“We hang out outside of rehearsal, we talk about life, we talk about work,” said Blankenship, who works in the Office of Deaf and Hard of Hearing Services in the Agency for Human Rights and Community Partnerships under the City of Denver.

The broadcast has had an impact in the deaf community. Kevin Delaney, president of the American Hearing-Impaired Hockey Association, said more than 100 people attended an “NHL in ASL” watch party for Game 3 on Thursday during the organization’s Stan Mikita Hockey School in Chicago.

“They loved it,” Delaney said. “I think it’s definitely something that should be continued. It gives access to people that are deaf to watch sports other than reading the captions. It’s meaningful.”

About 30 million Americans age 12 and up have hearing loss in both ears and about 2-3 of every 1,000 children in the U.S. are born with a detectable level of hearing loss in one or both ears, according to the National Institutes on Deafness and Other Communication Disorders. There’s an estimated 357,000 people in Canada who are culturally deaf and 3.21 million who are hard of hearing, according to the Canadian Association for the Deaf.

Renca Dunn, a deaf influencer and content creator, said, “Seeing this being available to the deaf community is like music to my eyes.

“Often times we miss out on announcements, side comments, or do not fully understand what is going on because maybe the caption is delayed or maybe the caption did not pick up on some words or maybe some words we do not fully understand. Deaf people are usually the last to know information, so having this opportunity gives deaf people an equal platform of knowing information at the same time as other hearing and able-bodied people. I would hope to see this happen again, and it’s a milestone to celebrate.

“This does not just impact deaf hockey fans but also impacts those who are still learning or want to learn more about the sport when we all can watch the same accessible game.”

(Article courtesy of www.nhl.com)

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Caregivers Need Care Too!

Come join the Caregiver Support Group! You not forgotten, you are not alone and we are here to support each other. Join us for a safe place to talk where we can share tips.

Our meetings will be tailored to your needs! One Thursday each month via Zoom. (dates TBD)

To join us, please reach out to Blagica at 201-996-9100 ext. 29

hipcil’s New QR Code

Scan our new QR code to learn more about our core services and programs for both the Bergen and Hudson CILs.

See below on how to scan our QR code:

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2. When your camera scans the QR code, you’ll see an icon or web address on your screen near the code. Tap it.

3. You’ll go to our website via your phone’s web browser, which should launch automatically.

If you do not have a smartphone or are unable to scan our QR code, please visit:

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hipcil continues to grow!

hipcil continues to grow!

hipcil continues to grow!

Our donation program has become so successful that we’ve had to upgrade to a full-sized storage unit!.

 

 

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Access Not Always Equal

Access Not Always Equal

Access Not Always Equal

Olivia Liu Asbury Park Press | USA TODAY NETWORK – NEW JERSEY.

Stanley Soden of Long Branch was heading down Lowden Court to pick up groceries for himself and two neighbors in his apartment building. Despite the sidewalks that line Monmouth Medical Center on his right, Soden, who uses a motorized wheelchair, was riding on the street next to cars and trucks.

The reason? For Soden, sidewalks can be less safe than streets. At a few curb cuts leading down the sidewalk along Lowden Court, puddles and potholes have the ability to tip his wheelchair.

That is one of the many barriers wheelchair users face to fully participating in the communities where they live.

Over 30 years since the Americans with Disabilities Act was signed into law, disability advocates are still fighting for equal access, with the federal law enforced haphazardly.

“Unless you’re in a wheelchair or you know somebody in a wheelchair, you know somebody who’s sick, it doesn’t affect you,” said Edward Lefty Grimes, a disability rights advocate. “And until it affects you, you’re not going to be bothered with it.”

For people with disabilities such as Soden, community integration has not always been a goal. When he was born in 1961 with cerebral palsy, doctors recommended placing him in an institution. But as the miracle child after three miscarriages, his parents wanted to raise him themselves.

During the decades Soden grew up, disability rights advocates began to gain traction in their demands to deinstitutionalize disability and staged sit-ins in federal buildings until Section 504 of the Rehabilitation Act of 1973, which would prohibit discrimination on the basis of disability in programs receiving federal funding, was signed into law.

When Soden was set to go to high school at Red Bank Regional, he nearly missed a whole year of school as the school boards of Red Bank and Long Branch fought over transportation costs for him.

“(My mom) was one of my biggest supporters,” Soden remembered. “She said they’re just fighting over money, and they’ll just figure it out.”

 

Hours on the bus

When Amanda Chirelli of Little Egg Harbor, who also has cerebral palsy and uses a wheelchair, was set to go to school in the 1980s and ‘90s, the school board wars of Soden’s time were over. She saw the passage of the Americans with Disabilities Act, which was adopted in 1990 and changed the built world. Handicap parking spaces, wider bathrooms and paratransit services were among the many changes that came about.

Chirelli relies on NJ Transit’s Access Link, the state’s paratransit service for customers with disabilities. Access Link buses follow the same routes and schedules of certain NJ Transit fixedroute buses, but are allowed to deviate up to three quarters of a mile from the bus route.

This allows customers with disabilities to be picked up at their homes and dropped off directly at their destinations. She praised Access Link, but wished there could be more times, more service areas and faster rides.

On a recent trip to visit friends at Soden’s apartment building in Long Branch for people with developmental disabilities, Chirelli set off from home at around 9 a.m., reached a bus depot around 9:30 a.m., transferred to another Access Link bus around 11:30 a.m. and reached Soden’s apartment building around 12:30 p.m. That same route would take a typical able-bodied driver an hour to an hour and a half to complete.

“I am fortunate enough to have public transportation,” Chirelli said, noting that many people with disabilities live outside its coverage zone. She said Access Link has given her the ability to have a social life and head into the office when needed.

But there are many places she would like to go to that are outside Access Link’s coverage area. For example, if Chirelli wants to attend her Thursday night church group in Barnegat, she needs to ask her parents to drive her to the service.

On Dec. 22, NJ Transit reached a settlement agreement with the U.S. Department of Justice to improve its Access Link services. The agreement said that many Access Link customers faced excessively long trips, late pickups, late dropoffs and excessive hold times on the phone, a way in which customers book rides.

NJ Transit has also received federal funding from the U.S. Department of Transportation in December to make Newark Penn Station, Princeton Junction, MetroPark, Trenton and New Brunswick train stations accessible for people with disabilities.

While Chirelli can bypass some of Access Link’s issues by leaning on her parents, Soden said, “Some people don’t have family. … They have to rely on the supports that they have around them. It can be a bit of a challenge.”

Supports including individual connections, disability-oriented programs and the physical structure of the built world. Chirelli said there are government sponsored programs, but many are not well advertised. She said the system is a patchwork.

In addition to Access Link, each county and certain municipalities in New Jersey have their own internal transportation services. Ocean County operates Ocean Ride and Monmouth County operates SCAT. Chirelli said she doesn’t use the other transportation services as much as Access Link because of their limited hours that would restrict what she can and cannot do.

She said the state Department of Developmental Disabilities also provides a list of vetted accessible transportation vendors for people with developmental disabilities, but decided against using those services because of cost and the vendors’ preference for customers who travel multiple times a week on fixed schedules.

“I would compare private vendors to a limo,” Chirelli said.

Soden noted that prices range for private vendors and some charge additional fees for using its ramps on top of a fare for every mile traveled.

But being able to get from one place to another does not guarantee access. The ADA compelled newer buildings to be built with disabilities in mind, but many older buildings continue to be inaccessible.

With the exception of private homes and historic buildings, most older buildings, including structures publicly and privately owned, need to be retrofitted to comply with ADA requirements. However, many municipalities do not prioritize enforcement.

 

‘Live life to the fullest’

Wali Mohammed used to work in construction. He said his company would make new buildings accessible from the beginning and modify existing buildings to comply with accessibility requirements.

Then in 2001, Mohammed was in an accident on Route 36 in Eatontown and was left paralyzed from the chest down. He is capable of driving a car but relies on a motorized wheelchair to get around.

“There is a lot to do in life,” Mohammed said. “As long as I can get in this chair, (I’m) able to live life to the fullest.”

Soden, Chirelli and Mohammed are coworkers at MOCEANS Center for Independent Living in Long Branch, which connects people with disabilities in Monmouth and Ocean counties to transportation, housing and employment resources for free.

Part of Mohammed’s job with MOCEANS is to conduct site inspections. He said each municipality in New Jersey approaches ADA differently.

In Monmouth and Ocean counties, only a handful of municipalities have a designated employee or committee that addresses disability issues.

Keyport, Middletown, Jackson and Stafford have either an ADA compliance officer or a specific person to contact such as the township administrator about access issues.

Belmar, Matawan, Lakewood, Lavallette and Toms River have committees or community partnerships focused on issues that people with disabilities face. In other municipalities, the human relations committees or the code enforcement departments handle ADA compliance issues.

However, enforcement varies widely. Older municipalities such as Asbury Park, where Mohammed lives, are less accessible than municipalities with newer infrastructure.

A big foodie, Mohammed said he often relies on word of mouth to determine if the recommended restaurants are accessible to him and that even then, he estimates about 20% are not accessible when he arrives. Due to a lack of enforcement, local governing bodies do not keep track of the number of places that are genuinely accessible.

He said sometimes places are labeled as accessible because a wheelchair can enter the building, but then lack a path to the performance hall or lack an accessible bathroom.

“In terms of the ADA, we still have momentum, a lot of our policies with the ADA haven’t rolled back. And we still have people working on that,” Mohammed said. “But it can be pushed on a little more and tweaked a little more.”

 

‘We’re going to go back there again’

Grimes lives in Bayonne, a city full of stairs. Even getting into a ground-floor store often requires stepping over a raised threshold.

Grimes, who injured his back and shoulder while working, has had numerous surgeries that had left him taking Roxicodone every three hours.

“(It) is an incredible amount of opioids,” he said, and it took him 10 months and four tries to wean himself off the painkillers.

If Grimes’ body feels OK for walking, he walks. If his body doesn’t, he rides around in a motorized wheelchair.

Grimes remembers traveling in Englewood with a friend and traveling past blocks and blocks of stores and restaurants before finding a single restaurant that was wheelchair accessible.

“It was the best Thai food we ever had,” Grimes said. “We would never have experienced that, had they not had a ramp. But since they had a ramp, we went in there and experienced one of the greatest meals we ever had and we’re going to go back there again.”

Grimes said he has seen parking labeled “accessible” despite having no curb cuts and “accessible” signs on doors that led to stairs. He said he has gone to politicians’ offices that lack access and was kept from candidate forums because of physical barriers.

Grimes said people with disabilities have been advocating for hybrid town meetings available online for years so their concerns can be voiced. And he finds it frustrating that it was only when the pandemic began causing able-bodied people to get sick that municipalities began adopting online options for local town meetings.

But Grimes said he understands the apathy. His aunt who lived across the street in Bayonne had a disability and was homebound.

“I just thought, ‘Aunt Helen just doesn’t leave the house,’” Grimes said. “But there was nothing available for her to go to.”

 

Confrontational activism

Judyth Brown, the executive director of MOCEANS, said she came to disability activism after finding out in her previous marketing job that people with disabilities were some of the best employees for social media. She said people with disabilities are an underemployed population.

“Lots of people see disability as an inconvenience,” she said. “There’s kind of a morality piece to this. So dedicating resources to (accessibility) that people don’t see as legitimate is really rough.”

She pointed at Access Link, which deviates from fixed bus routes to accommodate people with disabilities, but is limited in scope. “So what is it like to not have adequate access to work? Imagine having to commute and depend on resources that actually won’t come and get you.”

Grimes came to disability activism through cannabis activism with the nonprofit group Sativa Cross. He found that many medical marijuana users also had mobility disabilities and used the same strategies of cannabis activism to address wheelchair access.

Grimes’ group would always make a scene. Whether wearing a wrestling mask and a bong costume or singing songs, Grimes’ approach to activism is confrontational. While most wheelchair users have a mental list of inaccessible places that they end up avoiding in the future, Grimes’ crew would go to those places and demand to know why it hasn’t been made accessible.

Grimes said the Jersey City office of Assemblywoman Angela McKnight, DHudson, representing New Jersey’s 31st district, lacked a ramp until his group confronted her office. The Mrs. Fields shop in Bayonne bought a ramp after Grimes wrote to its corporate headquarters. And he said he gave the beauty store Childish Glow in that city a ramp from Amazon.

“The people that fight with us are always the ones that get the ramps, which is uncanny,” Grimes said. He said, in his experience, the people who smile and sidestep his confrontation never end up supplying a ramp.

While he said it is important to spread awareness about wheelchair accessibility, he hopes local municipalities would pass ordinances that would compel public places like post offices, police stations, restaurants and pharmacies to become wheelchair accessible. He also hopes there could be an app to crowdsource input about areas of accessibility.

 

The next generation

Carolyn Schwebel of Middletown grew up in rural Vermont in the 1950s. Born with cerebral palsy, she experienced a range of mobility throughout her lifetime. In her youth, she could walk, which kept her in her two-story public high school, and now, in her retirement, she uses a wheelchair.

From the time she was young, her family fought against outsiders’ expectations of what she can and cannot do.

She eventually received a bachelor’s degree in English, a master’s in counseling and a doctorate in school psychology. She even got married and worked in the Middletown school district, retiring in the mid-2000s.

During her work with the school district, she found that her disability allowed her to connect with the next generation of children with disabilities, who often faced the same hurdles she did.

Schwebel successfully sued the Red Bank Public Library in the early 2000s with her friend Carmena Caivano-Stoney for not complying with the ADA.

“The kids’ library was not accessible,” she said. “It had steps going down and they hadn’t really thought about that until we mentioned it.”

Schwebel also sued the borough of Red Bank and Riverview Medical Center for a lack of accessibility. In 2007, Schwebel sued the township of Middletown.

The settlement compelled the township to hire an ADA compliance officer. People are now able to file complaints about inaccessibility directly to that office and the township now has an ADA transition plan.

The first step, identifying which township facilities are not accessible for people with disabilities.

“The little kids that are coming up,” she said. “Someone’s got to speak for them.”

 

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Hearing Aids without prescription

Hearing Aids without prescription

FDA allows hearing aids to be sold without prescription


The ruling applies to devices for adults with mild to moderate hearing problems.

Millions of Americans in need of hearing aids will soon have a more accessible and affordable option to buy them without a prescription. The Food and Drug Administration this week finalized a new rule allowing for the devices to be sold over the counter; the ruling applies to hearing devices for adults with mild to moderate hearing problems. No medical exam or specialists are needed.

“It is going to be a lot more accessible because you won’t have to go to the doctor, you won’t have to get your hearing checked. It’ll be just like going into a drugstore like Walgreens or CVS for reader glasses,” said Baylie Sappir, a vocational assessment specialist with Easterseals New Jersey.

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