hipcil Newsletter Summer/Fall 2024

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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

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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.

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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.

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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.

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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)

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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.

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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/)

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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/

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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

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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

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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 +

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Saying Goodbye…

Our hipcil family recently lost the following:

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

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hipcilGala

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

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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)

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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 Support Group

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

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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:

1. Open your smartphone’s camera app and point your phone camera at the code. It doesn’t matter whether you’re holding your phone vertically or horizontally, and your phone can even read the code upside down if it isn’t facing you.

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:

https://www.hipcil.org/core-services