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

LICIL Issues Statement Calling for LIRR to Bridge Service, Safety Gaps

July 2, 2018

 Lawsuits like the class-action recently filed by Long Islanders with disabilities against the Long Island Rail Road are about a great deal more than just bridging the gap between the train and the platform. At issue are the very civil rights of people with disabilities.  At stake is our dignity — Our right to live, work, learn, and undertake any and all of life’s pursuits on a playing field equal to our peers and neighbors without disabilities.  The time is now to eliminate the gaps in service and safety that have hung like a shadow over every trip and marginalized commuters with disabilities for far too long.

People with disabilities are entitled to ride the train with the same level of service, safety, choice and convenience as those without disabilities. The Americans with Disabilities Act (ADA) made that clear when it was signed into law 28 years ago this July.  At long last, the LIRR must pledge to work together with citizens with disabilities and community leaders to create a commuter landscape where customers with disabilities can travel with confidence — not fear that they may end up stranded or injured because there is no bridge-plate to close the gap.

On behalf of the constituents with disabilities we represent, the Long Island Center for Independent Living, Inc. stands in solidarity with the plaintiffs and with all concerned and interested stakeholders. We look forward to an outcome that will result in full and unfettered access to an LIRR transit system that effectively welcomes and serves ALL its passengers, disabled or not.


Action Alert: Support the EMPOWER Care Act and Community Living!

June 14, 2018

Join the June 22 National Call-In Day!

Money Follows the Person (MFP) is a Medicaid program that has helped over 75,000 people with disabilities and seniors move out of nursing homes or institutions and back into their communities. MFP restores the dignity and liberty of people with disabilities by promoting and supporting choice and community living.

Funding for the MFP program expired in 2016, and states have already scaled back their plans by approximately 40%. We need your help and advocacy to get the Senate and House of Representatives to pass the bipartisan EMPOWER Care Act (S.2227 and H.R.5306), which would extend and improve the MFP program. Last year was the first time that the number of people that transitioned to the community had declined.

By passing the EMPOWER Care Act and funding the Money Follows the Person program, Congress can help more people with disabilities transition out of institutions and nursing homes and back into the community. Without action NOW, more people will be trapped in institutions.

Help people living in nursing facilities and other institutional settings move back into their communities!

National Call-In Day to Celebrate Olmstead Anniversary
June 22, 2018

June 22 marks the 19th anniversary of the Olmstead decision, which recognized the right of people with disabilities to live, work, and participate in their communities. Join disability advocates around the country on this day for a National Call-In Day to support community living and urge your Senators and Representative to co-sponsor the EMPOWER Care Act to extend the Money Follows the Person program and help make Olmstead a reality!

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Senators and Representative.

Visit the National Call-In Day to Celebrate Olmstead Anniversary web page hosted by the Center for Public Representation for a guide to using the Capitol Switchboard, a call script, and additional talking points. Join the Facebook Event to get the latest updates.

Social Media

Use hashtag #FundMFP in your posts and tag your Members of Congress (Senate Twitter Handles | House Twitter Handles)


MFP Enhances Opportunities to Live Independently and Age with Dignity

Medicaid requires states to provide care in nursing homes, but makes home- and community-based services (HCBS) optional. MFP better re-balances Medicaid by providing grants to states to cover transitional services for individuals who wish to leave nursing homes or other institutions. Thanks to MFP, over 75,000 individuals with chronic conditions and disabilities and seniors have been able to transition from institutions back into the community since 2015.

MFP Rebalancing Demonstration is a Success Story – Improves Quality of Life

At the end of 2015, more than 43 states and the District of Columbia were participating in the MFP demonstration. As part of an evaluation provided to Congress in a 2017 report, the Centers for Medicare and Medicaid Services (CMS) concluded that there is strong evidence beneficiaries’ quality of life improves when they transition from institutional to community-based long-term services and supports (LTSS). MFP participants experienced increases across all seven quality-of-life domains measured, and the improvements were largely sustained after two years.

States Save with Money Follows the Person

Providing LTSS in the home is more cost effective than institutional care because, among other reasons, it eliminates the need for Medicaid to cover the cost of room and board in a nursing home. On average, per-beneficiary per-month expenditures for those participating in the re-balancing demonstration declined by $1,840 (23 percent) during the first year of transition from a nursing home to home and community-based LTSS. CMS also found that MFP participants are less likely to be readmitted to institutional care than other beneficiaries who transition but do not participate in the program.

The Time is Now: Money Follows the Person Expired in September 2016

Unfortunately, the MFP program expired over a year ago. States can continue to use their remaining grant funding through 2020, but that is not enough to maintain the program at current levels, and certainly will not allow states to expand the number of participants. Overall, states have had to scale back plans submitted to CMS by approximately 40%. This means fewer individuals will be able to transition out of institutional settings into the care setting of their choice. The EMPOWER Care Act solves that problem by reauthorizing the program through 2022.

The EMPOWER Care Act Makes Improvements to the Program

The EMPOWER Care Act improves the MFP program by reducing the number of days someone must be in a nursing home before becoming eligible to transition from 90 days to 60 days (evidence shows that the longer someone remains in a nursing home, the harder it can be to transition out). The legislation also enhances the reporting and accountability of MFP funding and requires the Department of Health and Human Services to conduct a best practices evaluation that covers the most effective state strategies for transitioning beneficiaries from institutional to qualified community settings and how such strategies may vary for different types of beneficiaries.

Ask your Members of Congress to Co-Sponsor the EMPOWER Care Act Today!

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);