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In the Loop:
Keeping pace with the world of disability, one blog-post at a time.

PWD/AFN Needed to Participate in Red Cross Exercise

May 14, 2018


If you care about disaster planning that includes everyone, we’ve got just the opportunity for you!

People with Disabilities/Access and Functional Needs are needed to help the Long Island Red Cross test and assess its emergency shelter operations plan.

The Long Island Center for Independent Living, Inc. (LICIL) and

The Access and Functional Needs Advisory Coalition (AFNAC)

invite you to join us for a Briefing and Information Session on the upcoming Full Scale (Hurricane) Exercise.

Eli Russ, Mass Care Manager for LI Red Cross will discuss the planned exercise and provide information on how YOU can get involved.

Date: Wednesday, May 30, 2018

Time:  1 pm

Place: L.I. Center for Independent Living, Inc., 3601 Hempstead Tpke., Levittown, NY 11756  — 5th Floor Conference Room

RSVP: Therése Brzezinski —; 516-796-0144 (V)

516-796-0135 (TTY)

If you require Reasonable Accommodations, please RSVP no later than May 23rd.


[Note that the Full-Scale Exercise will take place at SUNY Farmingdale on June 9, 2018.  More details will be provided at the LICIL Info Session and Briefing on May 30th.]


Light Refreshments will be served.


Disabled Community to Call for Equal Access to LIRR Stations

August 14, 2017

To the dismay of countless people with disabilities, many Long Island Railroad (LIRR) stations pose a glaring lack of equal access, with elevators only available at some boarding locations. It’s not at all uncommon for commuters with disabilities to have to travel miles out of their way to find a station where they can access the platform. 27 years post-ADA, that’s troublesome, to say the least.

Come down to the Amityville LIRR Station (street level) this Thursday, August 17 at 2:30 pm as Senator John Brooks, local officials and transportation and Disability advocates gather to call for ADA compliance. We need members of the Disability community and its supporters to be visible and to help voice our concerns about equal access.

Check out The Media Advisory for all the details. (Remember that the Amityville LIRR station does not have an elevator. Alternative methods of transportation – personal, paratransit, etc… may be necessary.)

Those planning to attend are asked to RSVP to Senator Brooks’ office:; 516-882-0630.

Tell a friend!

Media Contact: Carolyn Stone 516-506-9467
**Media Advisory for August 17**

(Amityville, NY – August 2017) Senator John E. Brooks, along with local elected officials, transportation and disabilities advocates, will call for the installation of elevators in Long Island Railroad stations, on Thursday, August 17th at 2:30 p.m. at the Amityville LIRR Station.
Senator Brooks recently met a disabled United States Air Force veteran who travels five miles from his home in Amityville to the Massapequa LIRR station – the closest accessible LIRR station – in his scooter, along busy streets. The legislators will sign a letter to the LIRR demanding upgrades at local stations to enhance access for individuals with disabilities and comply with ADA standards.

WHO: Senator John Brooks
Assemblymembers Christine Pellegrino and Kimberly Jean-Pierre
Suffolk County Legislature Presiding Officer DuWayne Gregory
Amityville Mayor Dennis Siry
Disabilities advocates
Transportation advocates
Local residents affected by inaccessible LIRR stations

WHAT: Press conference and letter signing calling for ADA-compliant upgrades to LIRR stations

WHEN: Thursday, August 17th at 2:30 p.m.

WHERE: Amityville Long Island Railroad Station
John Street, Amityville


Advocates Gear Up to Tell Congress, “Have a Heart for Valentine’s Day”

February 7, 2017

If you’re concerned about the future of healthcare for PWD, you’ve got to get in on this!
Our IL partners at Center for Independence of the Disabled New York are preparing for a Valentine’s Day social media campaign and we’re supporting the effort! The goal is to reach Republicans who have not yet supported the ACA, Medicare and Medicaid . We are asking people to do the following:

1. Do a snapshot of yourself and in three or four sentences describe why you need (Medicare, Medicaid, the ACA) and why if this coverage goes away your health and independence will suffer. Ask your Congressperson to “Have a heart for Valentine’s Day and preserve the ACA, Medicaid and Medicare”
2. Do a quick video on your phone that shows you and speaks for 30 seconds to one minute about how your health and independence would be affected if Medicare, Medicaid and the ACA are dismantled. Ask your Congressperson to “Have a heart for Valentine’s Day and preserve the ACA, Medicaid and Medicare”

Here’s a story from the New York Times that is a good example of what someone can do.

“Rosanna Armendariz, 43, El Paso
It would be terrible for my husband and me. We have no other means to get affordable health care that will cover our pre-existing conditions. My husband is self-employed and therefore has no employer-based health plan, and I am a stay at home parent to our 8-year-old son with autism.
“Our son receives Medicaid and I am also very concerned about proposed cuts to Medicaid, and the Republican party’s desire to turn it over to the states in block grants. The Republican plan for health care is no plan. Many sick and disabled people will be left out in the cold.”

Post these stories on your Facebook or other social media page and ask your friends to share them. Post them on your Congressman’s page. Talk about why you are doing this and encourage others to act.

CDPAANYS, NYAIL, AAPD Issue Action Alert on ACA

January 10, 2017
This Action Alert came to CDPAANYS via NYAIL and the American Association of People with Disabilities (AAPD).


Act Now to Protect Healthcare & Medicaid!

The Senate is planning to pass a budget that will begin the process of repealing the ACA as soon as January 11. This is the first step in taking health care away before having a plan to replace it.

There is also talk about proposed changes to the Medicaid program to have it funded through block grants or per capita caps.

Read below to learn more about how each of these possibilities would be detrimental to the disability community should they come to fruition and be sure to follow our Call To Action!

The Affordable Care Act

There have been attempts to repeal the ACA in the past, but President Obama has made it clear that he would veto any repeal bills. President-Elect Trump has expressed his support for repealing the ACA. There are key provisions within the Affordable Care Act that support the health and well-being of people with disabilities. To name a few:
  • Health insurers cannot deny someone health insurance on the basis of a pre-existing condition, including a disability or chronic condition;
  • There are no arbitrary financial limits to how much healthcare an individual can receive in a year or in their lifetime;
  • More people with disabilities receive supports to live in the community of their choice rather than in an institution;
  • 20 million adults and children have health insurance through Medicaid expansion and health insurance subsidies;
  • The Money Follows the Person (MFP) demonstration program that helps people with disabilities transition from institutions to the community was reauthorized and expanded;
  • The Community First Choice option (CFCO) was established, which increased the Federal Matching Assistance Percentage (FMAP) for states who provide new or expanded home and community based services (HCBS);
  • The U.S. Access Board was authorized to develop accessibility standards for medical diagnostic equipment (MDE);
  • Millions of young adults have been able to stay on their parents’ health insurance plan until age 26; and
  • Health insurers provide more people with the services they need – including mental health services and rehabilitation services and devices.
There are countless other provisions in the ACA that are important to people with disabilities. The ACA has unquestionably improved access to care for people with disabilities and chronic conditions to help them live healthy, independent, and fulfilling lives. Learn more about how people with disabilities benefit from the Affordable Care Act (source: Consortium for Citizens with Disabilities).


Call the US Capitol Switchboard at (202) 224-3121 and ask to be connected to your Senator’s and/or Representative’s office. You can find your Senators and Representatives here.

Tell your Members of Congress:

  • Vote NO on the Budget package that leads to eliminating the Affordable Care Act.
  • People with disabilities need access to comprehensive and affordable health care.
  • Congress must include the disability community in any discussion about repeal and replace to ensure that any changes meet the needs of people with disabilities.
Tweet your Senators and Representative to tell them how important the ACA and Medicaid are to you.
Sample tweets:

119 Washington Ave Suite 3A
Albany, NY 12210PH: 518-813-9537
FAX: 518-813-9539

URGENT ALERT: Tell Gov. Cuomo to fund minimum wage for CDPA

December 7, 2016

Consumer Directed Personal Assistance (CDPA) programs are a lifeline for countless people with disabilities and senior citizens.  As a homecare option, CDPA can mean the difference between living freely and productively in the community and simply existing in an institution.

As the NYS minimum wage increase phases-in across the state, CDPA programs are at an increasing risk because providers cannot afford to operate without funding to support the required wage rate.

If you are a person with a disability or you know someone with a disability, please respond to this CDPAANYS Action Alert today.  For all the background a quick and easy way to tell Gov. Cuomo and your Representatives to fund the minimum wage for CDPA, click here.

As ADA Turns 26, PWD Write On!

July 26, 2016

Toddrcr-logo-hz-wt-100ay is July 26, 2016 — An extraordinary day in our history.  The Americans with Disabilities Act (ADA) was signed into law on this day 26 years ago and that’s reason to celebrate; to reflect; and to look with hope and determination toward a future where disability rights are fully recognized and revered as civil rights — human rights to be preserved and protected without hesitation or breach.

Indeed, on that hot summer day in 1990, George H.W. Bush signed into law the most comprehensive legislation ever crafted in the name of equal rights for people with disabilities.  And yet, more than a quarter of a century later, despite the advances made, the journey to true equality is far from complete.  26 years post-ADA, the unemployment rate among people with disabilities soars above that of people without disabilities; healthcare settings remain fraught with inaccessible equipment and facilities; moms and dads with disabilities often face the threat of losing their children or are denied the right to adopt; and cities and municipalities repeatedly fail when it comes to integrated disaster planning and access to the vote.

What a trip it’s been, and still, we have miles to go before we can rest. Yet, as discouraged and exhausted as we may find ourselves at times, we need only look to the countless people with disabilities who are boldly using the power of the written word to proclaim the victory of the ADA and to keep alive the message of its vast potential to take us beyond the limitations of today.  In their writing there is solace, sustenance and the will to press on.

Here are a few ADA-inspired selections well worth the read:



Disabled Parenting Project offers exciting line-up for ADA 26!

July 15, 2016
Whether defusing toddler tantrums, navigating teen angst, or juggling everything in between,  most moms and dads would likely say  that parenting is the toughest job they’re called to do, bar none.  And for many it’s also an opportunity they cherish beyond measure.  As mom to an awesome and spirited five-year-old,  I can certainly relate to that dichotomy.  But I do so through the prism of life as a person with a disability.  And that’s a perspective often left out of the “trending” dialogue of today’s world….  Until now, anyway….   It is with enthusiasm and just plain joy that I encourage you to check out the Disabled Parenting Project and all that it has on tap for the 26th anniversary of the ADA.  Together, let’s celebrate the power of #ADAparenting!


Join the Disabled Parenting Project in celebrating the 26th anniversary of the ADA and its impact on parents with disabilities!

  • Leading up to the anniversary, on July 26th, we plan to publish blog posts about the ADA and how it affects parents with disabilities. We are looking for parents, prospective parents, and professionals to write guest blogs on the topic! Please email us ASAP if interested.
  • On Tuesday, July 19th, at 4:30pm EST/1:30pm PST, the DPP is hosting a Twitter Chat to discuss the ADA and parenting with a disability! The hashtag for the Twitter Chat is #ADAParenting.
  • Also on Tuesday, July 19th, from 3pm-4pm EST/12pm-1pm PST, the DPP and the Christopher and Dana Reeve Foundation are hosting a free webinar, “Parenting with a Disability: Know Your Rights and Take Action.” Register today!

Health and Wellness: ADA 25 and Beyond

July 22, 2015

As we reach the quarter-century mark since the signing of the Americans with Disabilities Act (ADA), we should recognize and celebrate the freedom and independence it has made possible. Yet, we must not forget that countless people with disabilities continue to go without sufficient healthcare because architectural, communications and policy-driven barriers persist.

“Let this shameful wall

of exclusion finally

come tumbling down.”

George H.W. Bush
Upon signing of ADA
July 26, 1990

History has taught us, though, that there is hope; and the key to making that hope reality lies in those who believe in the promise of equality that ADA founders and advocates fought for with unwavering diligence. We must carry on, echoing the message of Disability equality in everything, including our healthcare. Let’s give voice to the cause by speaking up when we encounter situations that diminish our access to health and wellness. Courtesy of, check out these handy resources and share them with your healthcare providers today:



US Dept. of Justice: Access To Medical Care For Individuals With Mobility Disabilities

ADA Business BRIEF: Communicating with People Who Are Deaf or Hard of Hearing in Hospital Settings

U.S. Access Board Guide to ADA Standards Chapter 2: New Construction

U.S. Access Board Guide to ADA Standards Chapter 2: Alterations and Additions

Health Care and the ADA

Rocky Mountain ADA Center

“How’s Your Healthcare?” Join with LICIL as we aim to change access to health and wellness in our local community. Contact Kelly to learn more. 516-796-0144 (Voice); 516-796-0135 (TTY);


PWD must step-up as County holds disaster prep exercise

March 27, 2015

Don’t miss this great opportunity to lend your voice and experience as we aim for Emergency Management Plans that fully include people with disabilities. In the true spirit of “Nothing About Us Without Us” — Register today. Our lives depend on it.

Bracing for first blizzard of 2015

January 26, 2015

Once again, it is time to hunker down for snow and all the elements that come with it.

Please heed all warnings and instruction from emergency management personnel and refer to the following tips to help you stay safe:


  • Listen to a NOAA Weather Radio or other local news channels for critical information on snow storms and blizzards from the National Weather Service (NWS).
  • Avoid driving when conditions include sleet, freezing rain, snow or dense fog.
  • If travel is necessary, make sure you have a disaster supplies kit in your vehicle which includes: shovel, blanket, flashlight, water, snacks, first aid kit, extra batteries, sack of sand or cat litter.
  • Keep the gas tank full. A full tank will keep the fuel line from freezing.
  • Before tackling strenuous tasks in cold temperatures, consider your physical condition, the weather factors and the nature of the task.
  • When shoveling snow, take frequent breaks to avoid risk of injury or cardiac arrest.
  • Protect yourself from frostbite and hypothermia by wearing warm, loose-fitting, lightweight clothing in several layers. Stay indoors, if possible.
  • Bring pets inside during winter weather.
  • Make sure coats, gloves or mittens, hats, boots and warm clothing are available for all household members, along with extra blankets.
  • Eat regular meals and stay hydrated, but avoid caffeinated or alcoholic beverages.

HOME HEATING SAFETY Heating fires are the second leading cause of home fires.                          

  • Keep all potential sources of fuel like paper, clothing, bedding or rugs at least three feet away from space heaters, stoves, or fireplaces.
  • Portable heaters and fireplaces should never be left unattended. Turn off space heaters and make sure any embers in the fireplace are extinguished before going to bed or leaving home.
  • If you must use a space heater, place it on a level, hard and nonflammable surface (such as ceramic tile floor), not on rugs or carpets or near bedding or drapes. Keep children and pets away from m space heaters.
  • Never use a cooking range or oven to heat your home.
  • Keep fire in your fireplace by using a glass or metal fire screen large enough to catch sparks and rolling logs.

POWER OUTAGE If the power goes out, people should:

  • Use flashlights for light, not candles.
  • Keep the refrigerator and freezer doors closed as much as possible. Check refrigerated food for spoilage and if in doubt, throw it out. Your refrigerator will keep cold for about 4 hours. If the freezer is full, it will keep its temperature for about 48 hours.
  • Have coolers on hand and surround your food with ice in the cooler or refrigerator to keep food cold for a longer period of time. Keep the refrigerator and freezer doors closed as much as possible.
  • Turn off and unplug all unnecessary electrical equipment and any appliances, equipment or electronics to avoid damaging them when the power is restored.
  • Avoid unnecessary travel as traffic lights will be out and roads congested.
  • Watch animals and keep them under your direct control.


If someone is planning to use a generator, never use it indoors, including in a garage, carport, basement, crawlspace or other area, even with ventilation. Generators put off carbon monoxide fumes, which can be deadly.

Tips courtesy of the  American Red Cross