top of page

Urge Congress to Extend Money Follows the Person!

 

Now that Congress has addressed funding for the Children's Health Insurance Program (CHIP), they have the opportunity to use the same approach to restore and fund the Money Follows the Person (MFP) demonstration program. MFP was designed to help states transition people with disabilities from institutions into the community and to assist states in rebalancing their long-term services and supports systems to increase access to home and community based services. Since it began, 47 states have participated and over 75,000 disabled people have been liberated from institutions.

 

Unfortunately, MFP expired on September 30, 2016 and states have started to shut down their MFP programs. Although there was a lot of public attention on the need to reauthorize the Children's Health Insurance Program (CHIP), very few people in Congress were aware of the need to reauthorize and fund MFP. Congress must work to save and adequately fund MFP. It can do this by including reauthorization of MFP in the negotiations on larger funding issues and supporting the EMPOWER Care Act (S. 2227).

 

Take Action (http://cqrcengage.com/cdrnys/app/take-action?engagementId=427693&ep=AAAAC2Flc0NpcGhlcjAxAxZfVCEfBBwErOI8iEOdFYir5-2uebVtc-ZYcVVtcCqdEm04KuVlBR0R896T15JQT4otaA5dzNgeMDUej-U5_07NRYYB78WGiXn4ef0SWcY&lp=0)

ARTICLES

Top 5 Reasons Why Ed Roberts is Extraordinary

 

 

 

 

 

 

 

 

 

 

 

 

Portrait of Ed Roberts smiling

 

Today, we celebrate Ed Roberts Day and reflect on the life and accomplishments of this extraordinary man. Ed Roberts, “The Father of Independent Living”, dedicated his life to ensuring that all people have access to an inclusive society. Even as a young man Ed Roberts was unstoppable, believing that he could make a mark on the world even after his dreams of becoming a professional baseball player were irrevocably changed by a polio diagnosis. Ed refused to let his physical barriers hold him back from contributing an everlasting imprint on the lives of individuals with disabilities.

 

This list highlights a few achievements of Ed’s vast influence over the Disability Civil Rights Movement that still lives on in the disability community to this day.

 

1.   VISION - Ed firmly believed youth with disabilities have undeniable talent and potential needed to make meaningful contributions to the American workforce.

 

2.   CHAMPION OF CHANGE - With the help of Ed and his colleagues, the first Center for Independent Living (CIL) was established.  The CIL provided a model for a new kind of community organization designed to address the needs and concerns of people with a wide range of disabilities.

 

3.   ACCESS - During college at UC Berkeley, Ed was determined to create equal access to technology, transportation, jobs, voting, housing, and inclusion in schools as well as every part of life for people with disabilities. In spite of his disability, he traversed the globe and sparked a world-wide movement, with and for individuals with disabilities.

 

4.   ADVOCACY - As an adult and activist, Ed Roberts dedicated his life to ensuring full participation in society for people with disabilities.

 

5.   INDEPENDENCE – “We have begun to ensure a future for ourselves, and a future for the millions of young people with disabilities, who I think will find a new world as they begin to grow up. Who may not have to suffer the kinds of discrimination we have suffered in our own lives. But that if they do suffer it, they’ll be strong and they’ll fight back. And that’s the greatest example, that we, who are considered the weakest, the most helpless people in our society, are the strongest, and will not tolerate segregation, will not tolerate a society which sees us as less than whole people. But that we will together, with our friends, will reshape the image that this society has of us. We are no longer asking for charity, we are demanding our rights.” - Ed Roberts

 

Ed Roberts is one of the most important pioneers of the disability rights movement. He was appointed by Governor Jerry Brown and served as DOR’s Director from 1976 to 1983. We are proud to continue the advancement on employment for people with disabilities. To commemorate Ed Roberts Day the California Department of Rehabilitation, YO! Disabled & Proud, and the California Foundation for Independent Living Centers - CFILC are hosting a Twitter Chat on January 23rd @ 4pm PST. Join us as we discuss who Ed Roberts was and how his legacy lives on to this day!

MY TURN ON MEASURE M

 

Transportation for people with disabilities, should be about options, just like it is for the non disabled.  For them, it's easy getting in the car, taking the bus, hitching a ride with a friend, getting on the train, the plane or a cab.  Measure M is designed to create those alternatives for the disabled and seniors who no longer drive.  

 

I work full time and use a motorized chair and take Paratransit services to and from work on a standing order which picks me up at 8:30am and 5:00pm.  Beyond that, I use the bus since the bus stop is two to three blocks away.  The story changes on the weekend when I have to attend events or have activities outside the city, but still using paratransit.  Then, just when I think I can relax from work and recreate, I experience the worst abuse by transit providers when I'm sometimes left waiting on a ride for 2 or 3 hours!  This is unacceptable and definitely calls for transit options.  

 

Currently, Access Services supposedly offers rescue rides for people stranded especially in LA's suburbs, exposed to the extreme temperatures or in the city exposed to the urban frenzy.  But the Access Services Operations Monitoring Center supposedly providing rescue vehicles has significantly deteriorated and at best only becomes a redirect service, meaning, the stranded caller, instead of being assigned a rescue vehicle, is just redirected to the original Access Services contractor which stranded him or her, to rebook a replacement ride always an hour or so later, adding more aggravation to the poor rider.  Again, we sometimes are made to wait for hours even for the replacement rides!  

 

Measure M should provide for funds for rescue rides to an independent company apart from Access Services.  This is important because if funds are given to the same inefficient operation, consumers don't see real service improvement. Also there should also be more sufficient funding for taxi vouchers for low income seniors and disabled.  

 

Measure M should also provide same day service!  Disability is the only reason we cannot get same day rides and that is discriminatory!  People forget that we have lives too and that things come up that require immediate transit.  In the early days of Access Services, we had same day service.  I remember my Mom calling me at 2 AM to say that my Grandmom just died. Because of same day service available at that time, I was able to get a ride in less than 45 minutes to see my Grandmother goodbye before the funeral parlor took her away for embalming.  Non disabled people have most transit options 24/7 but not us with disabilities!!! 

 

Measure M should also provide ADA Gap services.  There are areas not covered by the Americans with Disabilities Act (ADA) of 1990.  And these are areas short of the mile-and-a-half-from -the-closest-bus -stop requirement to qualify for paratransit services.  Currently, the disabled who live beyond this line have no transit options except the expensive cabs.  Measure M should start ADA GAP SERVICES for seniors and people with disabilities!

 

Another big area to look at is the taxi industry and its ADA compliance.  Measure M should give taxis a stronger push to expand their disability services.  In LA for example, while it is getting relatively easier to get accessible cabs in the mid morning hours, it gets very hard in the afternoon and at night.  

 

So, to sum it up.  Measure M should see to the following: 

A)  the significant expansion of paratransit services and their continuing improvement.

B)  the set up of independent accessible transit rescue services for stranded disabled and senior riders.

C)  set up ADA GAP SERVICES to provide transportation to the disabled and seniors living outside the mile and a half to the closest bus stop paratransit area.

D)  the expansion of accessible and affordable taxi services and more funding for taxi vouchers.

 

Measure M is all about transit as a civil right, the freedom to move about which is key to the freedom of assembly which is still key.  The freedom to petition your government ultimately, the freedom to vote!

 

Written by:

Lillibeth Navarro

October 15, 2016

MY MENTOR RICHARD DEVYLDER:

AN AWESOME STRAIGHT SHOOTING CANNON

 

It is hard to fathom the death of someone and the cumulative impact of that loss especially in the different worlds s/he influenced. On the other hand, it is the death of that someone that uncovers the marvel of his life that brings focus to his particular journey and its beautiful unique design. I felt this true as I left for the office after the beautiful services for my dear mentor and friend Richard Devylder. I sat there at his memorial services listening to all the colorful, funny and moving testimonies from his family, friends, co-workers and colleagues, each bringing out an aspect of Richard’s life: his love for his Mom and the family, his passion for advocacy, his wicked sense of humor, his work ethic, his love for sports, his fondness for children, his generosity, his loyalty and many other aspects. We cried, we kept nodding, we laughed, we cheered, and we were touched and speechless.

 

Richard Devylder mentored me for two years when we were first getting started with Communities Actively Living Independent & Free (CALIF—the independent living center that serves the Central LA area of 50 zip codes) in 2001. He was assigned by the Department of Rehabilitation to guide me into learning the rudiments of agency management. I was a rabid activist and street fighter and he was the smooth and straight talker who knew the secrets of government bureaucracy. We had two different styles—I was touchy-feely, he was bottom line, I was the bleeding heart, he was the tough leader. We clashed occasionally but I trusted him and when I did, he never took my complaints personally—his “hand” on me was steady and I mostly followed his bidding because I felt he also respected my own instincts for success. When his mentoring was over after two years, he would still occasionally check on us and I would update him. Then we both became too busy. He went to Sacramento as head of the Independent Living Section of Department of Rehabilitation and I was more determined to succeed to show him that what he taught me was working. Then, in a dizzying speed of events, he attained the highest honor as special adviser to the President of the United States in the area of Emergency Management for people with disabilities. I felt very proud of him.

 

Last year in June at the Strategic Planning of the California Commission on Disability Access, we worked together for two days. This time, he had a personal care attendant consistently with him and he told me about the accident when after an airplane ride, his power wheelchair exploded and sent him flying in the air. His neck was badly hurt and severely affected his independent functioning. I got worried for him for a moment but was sure that he would recover fully. For the 25th Anniversary of the ADA, we honored him as one of our ADA Heroes and placed his picture with the others on a huge banner. I meant to call him and send him his certificate, especially after I heard that he had moved back to Southern California. And then the news came that he had died. I was shocked and immediately saddened. But he just barely retired, I protested! So I made definite plans to attend his services, also to finally meet the mother he was utterly devoted to and his sister and the rest of the family.

 

When I finally made it to the funeral home, I looked at his beautiful face and thanked him for his mentoring. I begged him to remind me of the lessons he shared with me. “CALIF is now on its 14th year!” I told him thinking too that he had a lot to do with that. He taught me to be tough minded and resolute, modeling to me how to consistently carry an even tone of voice no matter what was going on. I contemplated on his peacefulness due to a life well lived and in order. He was a man who achieved all his goals, including his dream of having a home by the oceanfront and retiring by the beach. At 46, he was done! Looking at him one last time to say goodbye, a thought came to mind. Richard born without arms and legs, was the Lord’s particular gift; he did not need them for he was destined to operate and impact the world like a cannon or a bullet—all body, without arms and legs but always causing a major explosion, and in this case, positive change!

 

Lillibeth Navarro

CALIF Executive Director

August 14, 2015

Yes on Measure M

 

CALIF supports LA County Measure M and we hope you did the same!

 

Measure M, known as the “Los Angeles County Traffic Improvement Plan,” would provide approximately $120 billion over 40 years to significantly expand the rail transit system and support the bus system all over LA County, as well as provide first and last mile connections to stations for people on foot and on bike and users of all ages and abilities.

 

CALIF supports Measure M because this Measure would provide 2% of total funds estimated to be about $2.4 billion over 40 years dedicated to seniors and people with disabilities by: 

  • Offering discounted passes for older adults, people with disabilities, and students;

  • Increasing funding for paratransit services;

  • While this $2.4 billion is a base it could be increased over time.

 

In addition to the $2.4 billion, Measure M would also provide 17% of all total funds as Local Return dollars to LA County cities that will increase funding for:  Neighborhood sidewalks repair, additional curb cuts, local Dial-a-Rides, and increased number of connections to bus stops and rail stations.

 

We encourage you to join us to support an initiative that will impact everyone, including people with disabilities.

Important News & Articles
 
CLICK HERE for an article on Independent Living: From Berkeley to the ADA to ILA by Administration for Community Living.

CLICK HERE for information regarding a Public Forum on Social Security reimbursements presented by CA Dept. of Rehabilitation
.
 

City of Los Angeles to spend more than $200 million to settle suit on housing for disabled.  Click on the link below for the article:

http://www.latimes.com/local/lanow/la-me-ln-housing-settlement-disabled-20160828-snap-story.html

Photos from CALIF's visit to Cal State University, Los Angeles Mobility Center on May 4, 2017.

Updated 3/6/19

LILLIBETH NAVARRO'S SPEECH FOR THE UNITED STATE OF WOMEN SUMMIT

May 5-6, 2018

 

Good afternoon and thank you all for being here! I’m Lillibeth Navarro, Disability Rights Advocate, Founder & Executive Director of Communities Actively Living Independent & Free (CALIF).  

 

This week at the National Archives Museum in Washington DC where we made a short family trip, I learned that it was actually the women who convinced our founding fathers that the opening statement to the Constitution should be a more inclusive phrase. They suggested and insisted that “We the people” be written as the opening phrase.  They deemed it as an inclusive and unifying statement appropriate in its context and purpose as a patriotic declaration.  And so it goes even in history, the opening statement is perfectly complementary to our mission as women.  America was born of women — mothers of patriots who were patriots themselves who took care of the wounded in battle knew that no nation ever thrives who excludes their women!  “We, the People...” has made the Constitution a statement of human rights for all people- not just men and what womanly intuition that was! The “all” in that prophetic statement includes us too, people with disabilities.

 

But for years we endured the isolation, the exclusion, the rejection of our families and society—our experiences of discrimination as a protected minority were painful and dramatic, almost identical to other minority groups guaranteed protection under the Civil Rights Act Of 1964 which unfortunately did not include people with disabilities. We were an afterthought and only those programs receiving federal dollars could not discriminate against us. However, learning from the great Martin Luther King, Jr, we gathered our community and led a great big group of wheelchair warriors and disabled advocates to demand a radical change to the physical environment, to government policies, to travel and communication; to the field of employment and housing. Our intrepid women leaders like Judy Heumann, Diane Coleman, Stephanie Thomas, along with Ed Roberts, Justin Dart, and Wade Blank kept the movement alive by sending to Congress, discrimination diaries as authentic evidence of the need for our own civil rights act until the passage of the Americans with Disabilities Act on July 26, 1990.
 

The ADA in its stronger California version, already enshrines the radical concepts of physical access to all public and private facilities, so that all can go any where they please; for access to all forms of public transit; communications for the blind, deaf and reasonable accommodations for those with mental, learning and developmental disabilities.   For the first time in our lives, people with wheelchairs could gain access to their friends, work, travel, etc. People with visual and sensory disabilities could touch, feel and see their environment, those with mental and learning disabilities became part of this human experience of exploring what life is about, what acceptance is and what being human means. We rose from obscurity to visibility, and even started an international revolution transforming countries and inspiring them to create access for their people.

 

However, beyond the physical manifestations of access and participation, are still the insidious obstacles of patronizing treatment, disrespect, discrimination, bullying, neglect and abuse. This July, the ADA is 28 years old but already in California, the ADA is being weakened by the office of the State Architect and the State Building Standards Commission. These government instrumentalities are fighting local activists who have gained incredible expertise and whose work over the years made California’s version of the ADA better than the federal version.  Our disability access experts like HolLynn D’Lil and many others up North were excluded from participation in the current discussion of very bad proposals to weaken the ADA in California.  To make matters worse, this trend has accelerated into a federal effort to weaken the ADA.

 

So, here is our CALL TO ACTION:

a.)   Please call the California Governor Jerry Brown and tell him to stop the attack on the ADA and the rights of people with disabilities.

b.)   Call your legislators to stop this misguided interpretation of access rights by the State Architect and his plans to reduce the ADA to a bare boned meaningless version to our civil rights.

 

No government should be able to go rescind our civil rights!  They would not do that to women, to racial and other minorities, so why do that to us?  Over our dead batteries!  Our civil rights, as the Constitution says are God-given and inalienable. Creating accessibility where there is none is a renewing the face of the earth, it is challenging the creativity of the best scientific minds, it is dredging up to the max the compassionate and respectful caring capacity of the human heart for our community of people with disabilities. It also unleashes the unimaginable rewards of our contribution to humanity.  Our role is to demystify the disability experience because disability and disease are part of human life.  We are at the forefront living its enigma and frankly as a result, the enormous wealth of resilience and incredible capacity for patience and problem solving.

 

As technology progresses and tasks get easier and easier for us and as we in the disability community grow closer and closer to optimum functioning and participation, one day, we shall meet at that beautiful authentic point of human understanding and our children will reap the rewards of such incredible connection!

 

Thank you!

Lillibeth Navarro
CALIF Executive Director

 

To view shortened version of speech, click here

10th ANNUAL TRANSPORTATION CONFERENCE

March 1, 2019

 

TRANSPORTATION PANEL: Transit is now a matter of civil rights for those of us to have the freedom to participate in the mainstream of society.  In fact, it was not even a driver who thought about the legal fight to accessible transportation, it was a Presbyterian Pastor—the late Wade Blank who was also working as an orderly in a nursing home in Denver, Colorado who was the catalyst for our transit movement.  

 

It was in the early 1980s and Wade had many young friends in the nursing home, full of life and enthusiasm but after all the day’s routine of meals, bathing and grooming, therapy and meds, they all had to turn off the lights at 8 PM and dutifully go to bed as good patients, no matter the youthful curiosity about the nightlife outside the confines of the facility.  He felt their oppression and made attempts to sneak them out for a beer at a club or a movie but he could not do it for many others yearning for the adventure.  In the meantime, he saw the cars, buses, taxis available as options for the nondisabled.  And then he started it, ADAPT—American Disabled for Accessible Public Transit and I was part of that history.  

 

From then to now, transit is even more meaningful because it is the means by which we get to explore life more fully, it is a means to find our place in society and leave our creative, productive mark in all our endeavors.  We are grateful for the options open to us now—paratransit, city and municipal buses, the trains and taxis, tour buses and very soon Uber and Lyft and similar options now popping up.  It is easy to be readily impressed but as riders, we are as cautious as we are enthusiastic.  

 

1.) We hope that transit design—how the inside seats are configured, how much space is allotted for safe and efficient boarding and deboarding are things that continuously necessitate attention, brainstorming, experimentation and updating.  For example, we need creative designs for safety inside paratransit vans and taxis—the middle seat folded up to add a passenger next to it threatens to crush the middle passenger in an accident because there is no airbag that deploys to protect him from the metal mesh on the left side.    

 

2.)  In the 25 years that I have been riding paratransit, I have had mostly very good and courteous drivers, thoughtful and engaging.  Where we begin to lock horns is in the area of policy interpretation and common sense.

 

Many of the systems are computerized I understand but we are human passengers, not boxes of merchandize picked up and dropped off—for the most part, we know best how our bodies work, how they fit or not fit into a space inside the van and we know too how our equipment work.  We know the layout of our buildings and where is best to park.  Paratransit policies should underscore that we know how to problem solve and are willing partners in facing specific challenges to difficult scenarios for our own safe and secure pick-ups and drop offs.  Drivers should not be made to feel fear of losing their jobs just because we are guiding them in our home turf.  

 

Policies need to have the buy in of the disabled riding public and not be strictly and blindly implemented, without a thought to what is reasonable and common sense.  Considering how diverse disabilities are, how diverse are designs for mobility devices and Assistive Technology, how uneven the Los Angeles topography is, not to mention how different communities are laid out, one size cannot fit all.

 

Policies are good when they enhance and promote ridership but when they are oppressive or implemented erroneously, they can present as the most formidable barrier to transportation.  Therefore it is always good to review their efficacy and to adjust them when necessary.

 

3.)  Safety and Security on the bus and the train:  A good number of us at CALIF use the train and the bus and we are increasingly experiencing the following:  

Theft and robbery:  just this week, two CALIF staff and their son were robbed on the Orange Line;

Attacks from Strangers:  One of us was thrown hot coffee at, getting wet on her way to the office, the other one was spat upon.

Unsafe street crossings and sidewalks:  Our Systems Change staff have had many near misses at a few city street crossings where the sidewalks are uneven or not even there.  

Unsanitary and unhealthy environments:  It is an extreme hardship to have to use the bus because they are made dirty by passengers and there is very little intervention to keep them clean and sanitary for the disabled riding public too.  I myself had to endure a bus ride next to a passenger with fresh feces in his pants.  It does not make sense when even hospital workers are protected with gloves and sanitary supplies for their health and we are exposed to the most unhealthy of environments on the buses!  We risk our health taking the bus sometimes and need to see a safe and respectful procedure on handling that scenario.  My wish for the system is to have a health car to the rescue for passengers obviously experiencing uncontrollable body discharges—it is a service for the riding public and the indisposed passenger obviously needing attention.

Inaccessible Bus Stops: Bus stops too are sometimes a problem especially when in the rain, we have to tread on mud.  

 

4.) Improve the Rescue Operations Center the way it was originally conceived:  In the late 1990s, we pushed for a 24-hour Rescue Operations Center to assist those stranded by paratransit and it worked very well because they would immediately send a driver to the rescue from whichever district he was originally working for as long as he was available.  I noticed that now, they have limited that to the respective districts that had caused the problem anyway—meaning, that they make the passenger wait for a driver in the same district where the ride originated, even if there was an available driver from another district.  This does not give justice to the stranded rider. 

 

5.) Bring back the Same-day Service:  In the 90s when there was not even Uber or Lyft, Access Services had Same-day Service.  I will never forget the joy of being able to attend many more of the last-minute impulsive activities I could join because we had this incredible service.  And that unforgettable night my Grandma died in Northridge and I could be with the family 40 minutes after I got the call. This service has since been removed because it was deemed an “enhanced service” over and above the minimum requirements of the ADA.  With so many public options now open to the nondisabled riding public, we ask that it be brought back because if Uber and Lyft are transit enhancements given to the public, we deserve it too under the ADA. 

 

• Did your community get activated in support of Measure M? 

Answer:

Yes, in fact, our disability community—Our Independent Living Center was among the first to be included in exploring the Measure.  We had several meetings and I see many of our ideas already being prepared for implementation.

 

• Did they support the ballot measure? Has Measure M met expectations?

Answer:

Yes, our community has been in support of Measure and voted for it.  Post election, I think it is a process headed in the right direction.

 

• Given Measure M’s specific 2% funding commitment for seniors, people with disabilities and students, what had you hoped Metro would do with the money? What’s your assessment of Measure M’s added value to services now?

Answer:

Transit is a complex issue and they say the Devil is in the details.  Transit advocates like us appreciate our inclusion in the planning and implementation of transit system program designs and the consideration of future transit innovations like micro-transit systems that serve small side streets not served by regular bus lines; innovative technologies that make bus and train stops more accessible; more security on the train and some bus lines, etc.

What we also need is a purposeful sharing of what used to be exclusive information for transit professionals with us advocates.  Close the gaps in transit information—include us in your professional conversations and conventions so that we are educated in the transit lingo—from budget to design to system efficiencies.

What we want to see is a more coordinated transit system that engages even private and limited transit providers like HMOs, grocery stores, even churches and others operating in their own silos so that one day, no one is ever left alone needing transportation!

 

Respectfully submitted by:

 

Lillibeth Navarro

Communities Actively Living Independent & Free (CALIF)

Founder & Executive Director

I'm a paragraph. Click here to add your own text and edit me. I’m a great place for you to tell a story and let your users know a little more about you.

NCIL Tips regarding COVID-19

 

Urgent Action Alert: Keep Telling Congress to Include People with Disabilities in Their COVID-19 Response!

Thank you for all the efforts you have already made to get Congress to include the needs of people with disabilities in the next COVID-19 relief package. Last week the Senate introduced the Coronavirus Aid, Relief, and Economic Security (CARES) Act, which does not address the needs of the disability community. Yesterday the House introduced the Take Responsibility for Workers and Families Act. This bill does address some, but not all, of our priorities. 

Disabled people are at disproportionate risk during this pandemic, and it is critical that all future legislation addresses our needs. And negotiations are happening now! That means we have just a little more time to contact our members of Congress as they continue working on their final package!

The key priorities the next bill must include are: 

More funding for Medicaid home and community based services: We need to make sure states have the resources to respond to increasing needs so people with disabilities can access the supports and services we need, and so people are not involuntarily institutionalized during this pandemic.
More support for personal care attendants (PCAs) and direct support professionals (DSPs): Among other things, this funding could be used to increase rates for PCAs/DSPs; provide paid sick time, family leave, overtime or hazard pay to PCAs/DSPs; and provide HCBS to individuals on waiting lists.
Making sure family caregivers for disabled adults are covered by paid leave: Paid leave must cover family members of adults with disabilities who step in when other supports become unavailable because of the crisis.
Ensuring people on means tested programs can access emergency income relief: People with disabilities and others on SSDI, SSI, and other means tested programs need to be able to receive relief payments like everyone else without worrying about income or asset limits.
Protection of the Individuals with Disabilities Education Act (IDEA): Senator McConnell’s recent proposal opens the door to waiving protections under IDEA and Section 504 of the Rehabilitation Act. As schools are working hard to ensure that learning continues even as schools are closed, now more than ever we need IDEA and Section 504 to be protected. And, we need significant increases in funding to State educational agencies (SEAs) and local educational agencies (LEAs) for IDEA instructional and support services during this pandemic!
Ensuring access to medications: This must include removing barriers to accessing a 90-day emergency supply of medications regardless of payer (including for controlled substances), as well as flexibility around the amount that can be filled/refilled.
Permanently reauthorizing Money Follows the Person: People belong in the community. People are being forced into institutions and we need to be able to bring them back home.
More funding for Centers for Independent Living (CILs): As you saw in our previous alert, Congress must ensure CILs have additional funding to respond to this crisis and meet the needs of disabled people in their communities. 
Take Action!

Our Members of Congress must hear from their disabled constituents. They need to know that people with disabilities matter and cannot be left out of the COVID-19 response! Congress is moving quickly, so please contact your Senators and Representative now! Please note that because of the pandemic, there are not many staffers in Congressional offices to answering the phones right now. If you can, focus on email and social media to make your voice heard!

You can find your Senators’ contact form at senate.gov and your Representative’s contact form at house.gov/representatives.
You can also use Resistbot to turn texts into emails, faxes, or letters by texting “RESIST” to 50409. You will be helped to write a letter, which Resistbot will deliver. When asked which legislators to send it to, choose “CONGRESS”.
You can find your Members’ Twitter handles, Facebook pages, and other contact information on Contacting Congress. A common hashtag being used is #WhatWeNeed.
You can also tweet at Congressional leadership – Mitch McConnell (@SenateMajLdr), Chuck Schumer (@SenSchumer), Nancy Pelosi (@SpeakerPelosi), and Kevin McCarthy (@GOPLeader). 
For more updates and information, resources, and past alerts about COVID-19, visit www.ncil.org/covid-19.

Here is a sample email. Please personalize it and put it in your own words if you can:

Hi, this is (NAME), and I’m from (CITY, STATE).

I’m writing to ask (SENATOR or REPRESENTATIVE) to make sure that any legislation related to the coronavirus pandemic addresses the needs of people with disabilities. The first two packages were a good start, but more has to be done to meet our needs. People with disabilities are disproportionately at risk during this pandemic, and we are relying on Congress for assistance to stay healthy and safe.  

The disability community has identified priorities that need to be addressed in this package. The CARES Act does not address these. The Take Responsibility for Workers and Families Act addresses some of them. I urge you to please make sure that the final legislation addresses all of these critical priorities:

More funding for Medicaid home and community based services;
More support for personal care attendants (PCAs) and direct support professionals (DSPs);
Making sure family caregivers for disabled adults are covered by paid leave;
Ensuring people on SSDI or SSI are able to receive COVID-19 relief payments like everyone else, without worrying about income or asset limits;
Protection of the civil rights of people with disabilities including the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Americans with Disabilities Act;
Ensuring access to prescription medications;
Permanently reauthorizing Money Follows the Person; and
More funding for Centers for Independent Living. 
Thank you for your time.

Sincerely,

(NAME)

bottom of page