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the 2019 News

Table of Contents
February 1 March 15 June 1
September 16 December 15
2018 News Archive
2017 News Archive
2016 News Archive

Monday Decermber 15, 2019

News Report

DIA Annual Elections

Disabled In Action of Metropolitan New York held its annual elections for officers and board of directors at the November meeting. Jean Ryan was elected to a second full term as President while Michael Acevedo and long time member Carr Massi retained their places as Vice Presidents. Philip Bennett moved from the position of Corresponding to Recording Secretary and Kathy Collins assumed the duties of Corresponding Secretary.

The board welcomed 2 new members as a result of the November election. Brooklyn residents Michael Ring and Leda Apikoglu were elected and have expressed interest in improving the organization’s presence in the the disability rights community. Pat Walls has also joined the board. Pat is a long standing member of the 504 Democratic Club. Joe Flocarri is also a new board member who was elected to fill the vacancy of Paula Wolff who passed away earlier this year. Mr. Floccari held on to his board seat in the election at the November 17th meeting.

DIA’s membership is increasing as is attendance at monthly meetings. We are slowly but steadily reorganizing and getting stronger. 2020 marks DIA’s 50th year of activism and advocacy and makes us the oldest, grassroots, cross disability rights organization in the nation and we look forward to continuing our work.

DIA Member Wins “Made In NY Award”

Emmy Award winning documentary filmmaker and DIA member Jason DaSilva was recently honored with two prestigious awards. The Mayors Office for Media and Entertainment gave DaSilva their “Made In NY” award for “significant contributions to the city's entertainment and digital media industries over the course of their careers.” Past recipients include Robert De Niro, Whoopi Goldberg, Spike Lee, Rosie Perez and Neil Patrick Harris.

On November 4th Jason also received the “Catalyst for Change” Award presented by the Coalition for Asian American Children & Families. The Catalyst for Change Award “honors Asian Pacific American leaders who are a force for positive change in the community and in their fields of work.”

Jason DaSilva is important in the disability community because of his success in the highly competitive field of film making. We can look at him as a ground breaker, a trail blazer and a role model that tells others with a disability that physical limitations do not preclude living a productive life. DaSilva is not only a successful filmmaker, he has also earned the respect of his peers in the media industry, as these most recent awards attest.

Jason DaSilva

Jason DaSilva’s importance goes beyond being a filmmaker with a disability and winning awards, he has taken the next step of using his skills and his platform to advance the cause of disability rights. In his 2013 film, “When I Walk,” which aired on the PBS Documentary series POV, DaSilva tells his story as a man with Primary Progressive Multiple Sclerosis coming to terms with his disability.

In his latest film “When We Walk” he takes on one of the most serious issues facing the disability community, specifically, the inequities in the health care system. In this documentary, Jason presents himself as a father who simply wants to care of his son, but is prevented by bureaucratic regulations.

Jason lives in New York, where Medicaid allows him to live at home with the 24 hour personal assistance he needs. His son however lives in Texas, where that state’s Medicaid program would confine Jason to a nursing home where his son would be unable to live with him. This powerful, personal story is also a pointed critique that highlights the unfair administration of services in the Medicaid system, not to mention a violation of the Supreme Court’s Olmstead decision.

Jason Dasilva is a self described activist who is using his art as a platform for social change. Artists and performers have often used their celebrity and public platform to champion causes. Nina Simone and Harry Belafonte were active participants in the civil rights movement in the 1960s and Sean Penn and Susan Sarandon spoke out to oppose the wars in Iraq and Afghanistan.

Disabled in Action is a streetwise direct action activist organization that has a long tradition of demonstrating loud and strong on our issues of concern. We are proud of what we have done and how we have done it. We also respect all forms of activism, advocacy, and community organizing that advance social justice. Our country is currently divided, not just along political lines but among racial, gender, economic, ethnic, and religious groups as well. As the most diverse protected class, people with disabilities, can set an example and lead the way with the task of coming together. Perhaps artists can help us bridge what divides us.

United Nations Conference on Health Care
for Women with Disabilities

Delegates at the ICPD25 Conference painted a grim picture of barriers and challenges women living with disabilities face accessing reproductive health services. According to Josephta Mukobe, principal secretary of Kenya’s Ministry of Culture and Sports, “We are perceived to be asexual and therefore offering us reproductive health information is considered wasteful.”

The International Conference on Population and Development (ICPD) was founded in 1994 to call for women’s reproductive health and rights to take center stage in national and global development efforts. It also recognized that reproductive health and women’s empowerment are intertwined, and that both are necessary for the advancement of society.

The ICPD25 was held this year at the the United Nations in New York. Disability rights advocates brought up a multitude of problems confronting women in developing countries that range from lack of sign language interpreters for people with hearing impairments to stigma and prejudice on the part of insensitive doctors and health care providers.

This article was excerpted from the Inter Press Service news agency and sent to the DIA Activist by DIA member Teriananda.
Another source for this story was:
The InterPress News Service
Information about the ICPD can be found at:
The United Nations FPA site

Japan’s National Diet
Made (Partially) Accessible

42 years after electing its first wheelchair using Member of Parliament, Japan is finally making the National Diet, its legislative building, wheelchair accessible. Yasuhiko Funago and Eiko Kimura were elected to the House of Councillors, Japan’s Senate, in July of this year. Both representatives use reclining wheelchairs and use personal assistants for their daily activities.

It seems the accommodations to the government building, constructed in 1938 include a temporary ramp that allows partial entry to the front of the building, a wooden ramp into the legislative chamber, the removal of desks to allow seating at the back of the chamber and extra electrical outlets for computers and medical equipment.

Eiko Kimura has cerebral palsy and Yasuhiko Funago has ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrigs Disease. Public response to these new law makers seems positive and a spokesman for the legislative body said “We’ll do everything we can for them so there’ll be no problems.”

Japan's National Diet

While these changes are said to symbolize evolving attitudes in Japan, many view this as a need to move toward universal design because Japan will be hosting the Paralympic Games next year.

Our sources for this story are:
Reuters News Service
Global Citizen
The Mainichi

Monday September 16, 2019

News Report

Greyhound, A Dirty Dog
After All These Years

In a statement on the Department of Justice website dated May 5th of this year, they announced that the Greyhound bus company would have to make payments to more than 2100 disabled passengers who experienced discrimination while using the bus line. The settlement cost Greyhound just under 3 million dollars and was part of a larger lawsuit that said “that Greyhound engaged in a nationwide pattern or practice of violating the Americans with Disabilities Act (ADA) by failing to provide full and equal transportation services to passengers with disabilities.” What was not mentioned was that disability rights activists have been complaining about this mistreatment for decades.

In August of 1997 protesters blocked ticket sales at Greyhound ticket counters nationwide because of their disregard for the ADA. The New York City part of this demonstration was spearheaded by Danny Robert and Nadina LaSpina and organized through Disabled In Action and City members of ADAPT. Activists at the Port Authority bus terminal chanted “Greyhound is a dirty dog” and blocked a bus before it arrived at the station. The protest made the New York Times (photo above).

And to emphasize the slow pace of change, a DIA action blocked the Greyhound ticket counter at the Port Authority in 1990, 3 months before the signing of the ADA. That protest was also chronicled in the New York Times and in that article, current DIA Corresponding Secretary Philip Bennett is quoted, criticizing Greyhound policy.

For 30 years, Greyhound, as the largest provider of intercity bus transportation in the country has ignored it’s responsibility to its customers. Disability rights adocates are asking if the 3 million dollar settlement price tag was enough. The real takeaway should be a message to all activists that change takes time, energy and a lot of persistence.

DOJ Press Releasse
NY Times article on Greyhound protest 1990
NY Times article on Greyhound protest 1997

In Memoriam

Marca Bristo was a disability rights activist and advocate both on the national and local stage. In 1984, Bristo along with other local activists chained themselves to Chicago Transit Authority buses, demanding access to public transit; mirroring the actions of DIA activist, Denise McQuade who, in 1981, sat on the steps on a New York City bus for 7 hours in frustration over the driver’s refusal to to use the wheelchair lift.

Marca Bristo is remembered by many for her energy and determination. DIA founder Judy Heumann described her as “an incredible leader. She was a visionary. She was undaunted by the word, ‘No,' " Bristo’s list of accomplishments include founding Access Living, the independent living center that serves Chicago, she was the co-founder of the National Council of Independent Living (NCIL), she was appointed as the chair of the National Council on Disability during the Clinton administration (and was the first person with a disability to hold that position) and was one of the disability rights leaders who helped write the Americans with Disabilities Act in 1990.

Marca Bristo

Bristo was born in upstate New York and raised on her family’s farm. She attended Beloit College in Wisconsin and Rush University College of Nursing. Bristo came to disability at age 23 when she had a diving accident suffered a spinal cord injury. Marca Bristo died of cancer on Monday September 8th of this year, she was 66 years old.

Summer in the City

For many New Yorkers summer begins with the Annual Mermaid Parade at Coney Island. Self described as “the nation’s largest art parade and one of New York City's greatest summer events.” The Mermaid Parade is wild and colorful display of costume creativity and in some cases, the lack thereof.

The Mermaid Parade is a spectacle and experience that should not be missed, and this year we found our first rolling mermaid (pictured to the right).

Disability Pride Parade 2019
The 5th Annual Disability Pride Parade stepped off on time on Sunday July 14th 2019. For the second year, its route went from Madison Square - 23rd street and 5th avenue - to its destination at the Disability Pride Festival at Union Square Park. The entertainment stage was setup under a tent and featured: Corey Hill, Elaine Kollo, the Beat Rockers, Heidi Latsky Dance Company, Jennifer Kumiyama, James Rushin and David Morris to name but a few.

The festival at Union Square was filled with booths representing organizations of and for people with disabilities as well as vendors, independent living centers and of course DIA. The temperature went into the 90 degree range but that did not seem to deter participation. Next year’s Pride Parade will celebrate the 30th anniversary of the signing of the Americans with Disabilities Act.

Rolling Mermaid

Saturday June 1, 2019

News Report

Hearings on EVV
Activists Should Attend

The DIA Activist has done several pieces on Electronic Visit Verification (EVV) over the past two years. For the uninitiated, EVV is a system that forces Medicaid recipients who use Consumer Directed Personal Assistance (self directed home care) to electronically check-in with their home care agencies when their PA (personal assistant) arrives and departs. Many in the disability community oppose EVV because they feel it violates their freedom of movement and ability to live independently; and by the way, their privacy too.

EVV is due to be fully implemented on January 1 2020 and has different rules from state to state. Some places use GPS tracking to locate and follow both the Medicaid recipient and PA. Other places impose military style tracking devices and other localities demand photographic proof. To many, EVV seems like an extreme invasion of privacy.

New York State has not established its requirements for EVV. The New York State Department of Health has started a series of “Listening Sessions” to hear from consumer directed personal assistance recipients, home care workers and the general public to gain feedback so they can better implement this federally mandated program.

It is imperative that people who concerned about EVV make their voices heard. There will be a listening session in New York City on June 18th. Details on the time and location are posted below. To sign-up to give testimony, click the link that follow. Service recipients and personal assistants are encouraged to attend and speak.

NYS Dept. of Health Hearing on EVV in NYC
Date: Tuesday June 18th
Time: 1:00 pm to 4:00 pm
Location: New York Academy of Medicine
1216 5th Ave
New York, NY 10029

To Register: visit the Eventbrite website

Medicaid Funds Non-Medical / Social Needs Pilot

In a report from the Kaiser Family Foundation, Medicaid is giving North Carolina $650 million for “a new pilot program, called ‘Healthy Opportunities Pilots,’ to cover evidence-based non-medical services that address specific social needs linked to health/health outcomes. The pilots will address housing instability, transportation insecurity, food insecurity, and interpersonal violence and toxic stress for a limited number of high-need enrollees.

Proponents of the program say it “may yield important evidence about how addressing certain non-medical needs may impact program costs and health outcomes.” These proponents also express concern that the pilot has only been funded for 5 years and that is not long enough. Another concern was that the scope and scale of th study is too narrow. CMS (the Centers for Medicare & Medicaid Services) is funding this program and it is not clear if they will use this model in other states.

Our source for this story is:
The Kaiser Family Foundation website.

Egypt Adopts Braille Ballots

Egypt held a referendum on new constitutional amendments on April 20th through 22nd and this was the first Egyptian election that used braille ballots to accommodate blind and vision impaired voters. New laws to improve access to voting have been passed in Egypt and a report in “Egypt Today” said “disabled people keen to vote” unassisted with the new braille ballots. Egypt's president also directed 80 million Egyptian pounds (about 4.8 million dollars) toward a fund that supports people with special needs.

While the referendum was a step forward for accessibility, critics say the constitutional amendments passed last month consolidate the power of the authoritarian president, Abdel Fatah al-Sisi. The reforms extended the presidential term from four to six years and el-Sisi's will be allow him to stand for an additional term. The president will also be allowed to unilaterally appoint the Vice President and the head of the supreme court. There are also new amendments that strengthen the powers of the president over the judiciary.

While the newly formed National Council for People with Disabilities may be happy by gaining greater access to voting, Egypt as a country is loosing some core democratic structures.

This story was published in the e-Newsletter of:
The Burton Blatt Institute at Syracuse University
The Law, Health Policy & Disability Center at the University of Iowa College of Law

The original story was published in:
the Apr. 21, 2019 edition of Egypt Today

Blind Sailor Crosses Pacific

As reported on the BBC website and National Public Radio (NPR), a blind Japanese sailor made a non-stop crossing of the Pacific. Mitsuhiro Iwamoto made the trip assisted by Doug Smith, his navigator who conveyed “wind directions and potential hazards” as they made the 8700 mile journey.

Mr. Iwamoto is the first non-sighted person to cross the Pacific; a voyage that started in California and landed in Fukushima Japan. The trip took 55 days. This was Iwamoto’s second attempt. In 2013, Iwamoto’s crossing was halted by a collision with a whale that ended up sinking his vessel. “He had to be rescued by the Japanese military.”

Mitsuhiro Iwamoto & naviator Doug Smith
For details, visit: the BBC website

Ali Stroker Nominated for a Tony Award

Singer, actor and wheelchair user Ali Stoker has been nominated for a Tony Award for her role in the Broadway show Oklahoma. Stoker has numerous TV credits including the series Glee and Lethal Weapon. She also played DIA founder Judy Heumann in a 2018 episode of “Drunk History.”

Ms. Stoker is currently on Broadway, playing Ado Annie in the Rodger & Hammerstein musical Oklahoma. She has been nominated for Best Performance by an Actress in a Featured Role in a Musical. The Tony Award ceremony will be held on Sunday June 9th and we’ll be rooting for Ali.

For more information on this story, go to:
New Mobility Magazine

Farewell to Danny Robert & Paula Wolff

Disabled In Action of Metropolitan New York lost two long time members. Danny Robert died on March 13th, and we lost Paula Wolff on April 18th of this year. Both were monuments in the world of disability rights and had profound influence on DIA.

Danny Robert was a true, “fire in the belly” activist devoted to ending “ableism” and breaking down physical and attitudinal barriers. Danny believed that people with disabilities should be able to lead independent lives with the services they need and fought with every bit of his energy to make that happen.

As someone who knew Danny, his most significant skill was getting things done. Whether it was a demonstration, protest or other direct action, if Danny called, you came. He was always at the center of planning and organizing; everything from the Greyhound bus protest to single payer health care, from Not Dead Yet to Occupy Wall Street, Danny was there.

The accomplishment that impressed me most was the creation of the first disability pride parade called the “Disability Independence Day March” (DIDM) held in 1993. Danny and his partner Nadina La Spina worked tirelessly to assemble the event that included: obtaining permits, a stage and venue, guest speakers and entertainment, along with all the planning, publicity and organizing from set-up to tear down; they handled all of it.

Before his disability, Danny worked in the film industry. He is survived by four children, his sister and his wife Nadina La Spina. Danny was 71 years old.

Danny Robert
Paula Wolff was among the original members of Disabled In Action. As a creation of the post 1960s protest movement, DIA and it’s young members attacked the problems of equal access to employment, transportation and public accommodation with the passion and energy of that time.

Paula was a disability rights activist dedicated to the movement but her career path was as a systems advocate. She had a Masters Degree in social work and worked at the Center for the Independence of the Disabled In New York (CID-NY) also known as the Manhattan independent living center. She was their senior benefits councilor and worked there for more than three decades.

If Paula Wolff had been a professional athlete, she would have been considered a utility player; that team member who could play all positions, as the need demanded. At DIA, Paula did whatever job needed to be done. She was our president, vice president and recording secretary at various times. She was always there to serve others and the organization. She also facilitated arrangements for DIA’s long time meeting place at Selis Manor.

Paula had incredible inner strength that lived behind a mild mannered, easy going personality. She will be deeply missed by DIA and the community at large.

Paula Wolff

Friday The Ides of March 2019

News Report

A Big Win for DIA & Subway Accessibility

On Monday March 5th, Federal Judge Edgardo Ramos said that the the New York City Metropolitan Transportation Authority (MTA) violated the Americans with Disabilities Act (ADA) when it renovated The Middletown Road train station and did not make it accessible to the community of people with a disability. The MTA must now go back and finish the job, starting with a feasibility study to provide access.

Disabled In Action and one of our board members, Robert Hardy, were two of the plaintiffs against the MTA and they were represented by Disability Rights Advocates (DRA), a New York and California based civil rights law firm.

This case is really important for a bunch of reasons. The ADA has a lot of complicated language about providing access when renovations are made to public facilities but the language is general. It is lawsuits like this that set specific standards for where, when and how access must be provided. And because this is a federal case, these standards will apply to the entire country.

The ruling talked about what kind of renovations “trigger accessibility obligations” and in this case it was alterations that “affect the usability of the station.” The renovations at the Middletown Road station on the number 6 line in the Bronx were large in scope, costing more than 20 million dollars and closing the station for seven months. The work included replacing and reconstructing floors, platforms, staircases, the mezzanine and lighting.

Because the reconstruction was major, it was clear that installing elevators should have been considered and they were not. The judge’s opinion has many references to the work replacing the staircases and it seems this was an important trigger for mandating accessibility. There is even a footnote that mentions a Federal Transportation Administration guideline “that specifically addresses what accessibility obligations a public entity triggers by replacing a staircase.”

What is clear in Judge Ramos’ order was how the MTA did everything in it power to wiggle out of providing access. Middletown Road was part of a bigger plan that started in 2003 to renovate the last 10 stations on the 6 line. Over the years, the “rehabilitation” was redefined as a “renewal” in order to make the project seem smaller and avoid ADA compliance. Grassroots activism and help from DRA prevented that from happening.

The most striking example of the MTA’s poor understanding of its obligation to provide access was reported in the DIA Activist in March of last year. The U.S. Department of Justice agreed with DIA, Bronx Independent Living Services and grassroots activists, and signed onto the DRA lawsuit against the MTA. So Judge Ramos’ partial summary judgment on March 5th of this year should not really be a surprise.

Hopefully the MTA’s past behavior toward ADA compliance is history and the agency will start moving in the right direction. Andy Byford, the new president of New York City Transit Authority has expressed a strong commitment to providing access and has even hired Alex Elegudin as the first Senior Advisor for System wide Accessibility. The real question is whether the governor and mayor can find the money.

Our sources for this story are:
DRA Press Release on Middletown Road
Article from AM New York
DIA Activist News Letter from March 2018

What Do Beyonce and Domino’s Pizza
Have In Common?

The Law, Health Policy & Disability Center at the University of Iowa College of Law newsletter reported that both Beyonce Knowles and Domino’s Pizza have inaccessible web sites. Title III of the Americans with Disabilities Act (ADA) mandates that “public accommodations” – defined by Wikipedia as: retail stores, rental & service establishments as well as educational institutions, recreational facilities, and service centers” – must be accessible to people with disabilities.

So do websites have to be accessible? It seems that in July of last year (2018), the 11th federal circuit court said

If you Google “website ada compliance” that search will yield several dozen ads for services that will help make your website accssible to people with disabilities. After the ads, comes a long list of articles about companies being sued over website compliance. There is even an article in Forbes Magazine that blames both Trump and Obama for the problem. Maybe the problem is big corporations with legal departments not doing their job.

Domino’s Pizza is being sued because it has an online ordering “app” that people with vision problems can't use. It seems that Domino’s didn’t tag or label the pictures on its site. Screen reading software uses these labels to describe pictures to blind and vision impaired people. Since the Domino's app used untagged images for making menu selections, customers with vision impairments were excluded from full access to the website. has a similar problem according to court papers filed on January 3rd in Brooklyn. The case was filed on behalf of a New York City woman as a class action. The complaint claimed that in addition to pictures without alternative text descriptions there were “other issues with the site including a lack of accessible drop-down menus and navigation links and the inability to use a keyboard instead of a mouse.” Since the case against Beyonce is based in New York City, her website is also violating city and state human rights law.

Our sources for this story are: in the Guardian in the Hollywood Reporter
Article on 11th circuit court ruling
BBC Article on Domino’s Pizza

DIA Lawsuit For NYPD
Precinct Access Advances

Since 2016 DIA, represented by Disability Rights Advocates (DRA), a leading non-profit disability rights legal center, has been demanding equal access to all of the city’s police precincts. Too many station houses have steps, broken wheelchair lifts, unsafe alternative routes and other barriers that block access. The city’s response has basically been that disabled folks should just go to another precinct.

According to DRA, progress has been in the case because the court ruled that the city’s "expert witness" was anything but an expert. It seems this person was excluded for using “unreliable methods.” Meanwhile, DRA’s expert will be allowed to testify and show the city’s noncompliance with ADA Standards at its police precincts.

For more information on this story, go to:
The DRA Police Precinct Access Press Release

Amputee Breaks Atlantic Crossing Record

As reported on the BBC website, a former British Royal Marine broke the record for rowing across the Atlantic Ocean. In what was described as an “unsupported, solo crossing,” Lee Spencer rowed his boat from Portugal to French Guiana in 60 days; and oh, by the way, Mr. Spencer is a single leg amputee.

Spencer broke the previous record held by a non-disabled person, by more than 36 days. In the process, the 49 year old ex-marine raised more than £55,000 for charity. To read more about this extraordinary endeavor, visit the BBC website at the link below.

BBC Story on Lee Spencer

Friday February 1, 2019

News Report

DIA Meeting Report

Disabled In Action (DIA) resolved to get 2019 off to a great start at its first meeting on January 13th. The Board met before the general membership meeting and the new board members were introduced. The board discussed improved ways of conducting business to correct the unfortunate and hurtful accounting done by the former DIA treasurer. The new treasurer, Phil Beder, kicked things off by submitting the improved financial report to the board. This report showed how truthful and transparent DIA will be this year. This is a sign of good things to come as DIA endeavors to engage in issues of concern to all people with a disability.
The general membership meeting began with Jean Ryan, the DIA president, reminding all that there needs to be respect given to every opinion. This began with introductions of every person present. She also reminded us that there is no meeting space after our meeting on February 10th. There was an update on the various court cases that DIA will participate in, and are beneficial to everyone in the disability community. Other reports were given by members; reports dealing with emergency management, a petition for ADA inclusive living regarding small business access, and the reintroduction of the “Disability Integration Act.” Another improvement instituted in DIA meetings aimed at bringing the disability community together began with the 15-minute break where the members were able to communicate with each other. During the break, the “50/50 raffle” was held, another new feature of DIA meetings to raise funds.

After the break, the disability community was informed of the current situation involving the Independence Care System by Danny Perry, our guest speaker. This was the first chance for many in our community to hear about the idea of a “Health Home” which ICS will offer to its members. We were also informed of the difference between this program and the transition of ICS to VNS health plan at the end of March.

The next DIA meeting will be held on Sunday February 10th from 1:30 to 4:00 pm at Selis Manor; 135 West 23rd Street. Items that will be discussed include the current issues DIA is involved with and other "topics of DIA activism." Please come with questions and issues of concern to you and the community at large.

Cuomo's Attack on
Consumer Directed Home Care

On Tuesday January 22, Brian O’Malley of the Consumer Directed Personal Assistance Association of New York State (CDPAANYS) blasted out an email announcing that “Governor Cuomo is looking to end the Consumer Directed Personal Assistance (CDPA) program as we know it.”

According to the email, the Governor’s budget will repeal the law that allowed the creation of self directed personal services. The new bill will greatly reduce the number of agencies that provide self directed services with the eventual goal of creating one statewide agency to provide CDPA services. The Governor’s plan is contingent on federal approval and if Washington doesn’t approve, the New York State commissioner of health could end self directed personal assistance services completely.

Brian O’Malley of CDPAANYS is calling on consumers of CDPA services to do three things:

  1. Call Governor Cuomo at 518-474-8390 and express your views
  2. Participate in the CDPAANYS legislative action day on February 11, 2019.
  3. Contact your NY State representatives to express your views about the Governor’s budget proposal.
For more information about the CDPAANYS lobby day:
Visit the CDPAANYS website

ICS Members Need to Stay Informed

Independence Care System is a Medicaid managed long-term care plan (MLTC) that serves many people with a high level of health care needs. Of the nearly 6000 ICS consumers, a high percentage use 12 to 24 hours of personal services and use power wheelchairs. Many DIA members get their services through ICS and those services will end on March 30th.

Officials at ICS have announced that its consumers will “automatically be enrolled in VNSNY Choice, the MLTC plan of the Visiting Nurse Service of New York. Members who join VNSNY Choice will be guaranteed the same level of services they currently receive for one year. Members who pick a different plan will be eligible to maintain their same level of service for 120 days.”

Because of the large number of high needs ICS members, the NYS Department of Health (DOH) said it could not sustain the ICS reimbursement rates. By “scattering” ICS members into many different and larger MLTCs the DOH thought it could lower its per capita costs. The bottom line is that the health department is looking to cut costs, but for the moment, the impending services cuts have been kicked down the road for 120 days to a year!

Another temporary fix is allowing ICS to become a “Health Home;” an integrated form of care management created under the ACA, better known as Obamacare. It seems that a health home serves as an individual’s case manager and arranges needed services. One problem is that the “ICS Health Home” will be the first of its kind in the state and its not clear that all the details have been worked out with regard to the scope of its authority.

The other problem is that ICS as been granted a contract to be a Health Home for only 2 years. This means that ICS members who enroll the the newly created Health Home might have their current level of services maintained for the contract period but there is no guarantee beyond that. A lot depends on federal funding and dependability is not a hallmark of the Trump administration.

People effected by the ICS closure and other “high needs” MLTC consumers have to sharpen their advocacy skills because service cuts seem to be the top priority of DOH and health care providers. Saving the social safety net is becoming a very high priority in the fight for disability rights.

The ICS Civics League will hold a meeting on Friday, February 15, from 2 to 4 PM at ICS Brooklyn. Representatives of Visiting Nurse Services will attend to answer questions. ICS members are encouraged to take this opportunity to hear directly from VNS and, most importantly, to ask questions and express concerns about the future of our care and services.

Help Wanted
(to fight for access)

Too many stores in New York City are not accessible to people who use mobility devices and a new and re-energized “OneStep Campaign” aims to tackle that problem. Many stores that change hands are required to provide access but they don’t! The Activist is asking people to report stores that have recently changed hands and have not provided access so we can find out why. We will use this data to ask the Buildings Department why they are not enforcing existing law as a first step in reviving the OneStep Campaign.

OneStep is possible because of New York City local law 58; a law that requires access in many commercial and residential spaces and makes it really easy to build a sidewalk ramp. A provision of local law 58 says that a ramp can be built on a city sidewalk without a permit, as long as the ramp extends 44 inches or less from the side of the building. Removing the need for a Buildings Department permit significantly reduces the cost of ramp construction.

Another part of local law 58 states that when an existing store closes and a new store opens in that space, the new store must be accessible. In other words, if a shoe store closes and a restaurant opens in that same space, that restaurant has to provide access. But too often new store owners don’t obey the law and the Buildings Department does not do its job of enforcement.

If you know of any stores that have changed hands and not been made accessible then please join the OneStep Campaign by telling us where it is. We would need the location, what the store was, and what it became. You can send your information by email to or by telephone at (718) 853.8171. Be sure to leave your contact information on the answering machine.

BBC Video Celebrating Individuality & Self Image

In the words of the 20th century, American, philosopher, Kermit-the-Frog, “It ain’t easy being green.” People with disabilities are often, made to feel different because of the way they speak, the way they move or the way they look. The BBC website featured a video of one young woman who decided to reaffirm her self image, both to herself and to the world.

Fatima Timbo received an incredible response to her Instagram post and her participation in a “Body Positive” campaign, an event held in London celebrating people of "all body types." The BBC website has a “disability” page that posts interesting short videos of people and their views on life. Fatima’s video, titled “I can't change my height but I won't be defined by it” caught our eye and we hope you find it interesting.

BBC Website Video on Fatima Timbo
produced by David Faye

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