Weekly Disability Reading List

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Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is posted every day.

RE: Independent Living Community’s 2024 budget priorities -- New York Association on Independent Living - October 2, 2023

A preview of New York State disability policy priorities for the coming year, in a letter to Governor Hochul.

‘There is still work to be done’: Voters with disabilities face unaddressed barriers to the ballot -- Katherine Gilyard, The 19th - November 9, 2023

Voting accessibility is still a problem. This article demonstrates why, and some of the complex ways it affects people with disabilities.

Dear Abby: Grandma who fixates on grandson’s disability, shames him, may get shut out -- Abigail Van Buren, The Oregonian - November 9, 2023

Families are important sources of support for children growing up with disabilities. But they can also make things harder with more damaging attitudes and behaviors.

Weekly featured video on NCCI’s home page: www.ncci-online.com

DISABILITY | How You See Me - Participant YouTube Channel

Action Alert: Governor Hochul Can Increase Home Care Data Transparency Today

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From The New York Association on Independent Living ...

The legislature passed A.1926A (Gonzalez-Rojas)/S.1683A (Hinchey) in June, a bill that would require the Department of Health to make CDPA and home care use data available to the public by publishing it on its website annually. DOH must already provide this information in the same format for Medicaid-covered institutional long-term care (LTC) services provided by nursing homes, hospitals, and other facilities, but not for home and community-based services (HCBS), and DOH has refused several past requests for this information. Members of the state legislatures need this information to make informed decisions on Medicaid spending when passing the annual budget that decides CDPA spending and policy.

The Bill is on the Governor's Desk

After passing both the Assembly and Senate, it is now up to Governor Hochul to sign A.1926A/S.1683A into law. Signing this bill would make the DOH reporting requirements equal for both Medicaid institutional placements and HCBS. Important information about the number of consumers enrolled in CDPA, how many there are per county, and the type of Medicaid plans that they have will help lawmakers address the workforce crisis and shortfalls in service access. There will be no identifiable information published, just aggregated data to protect consumer privacy.

Help Make the Difference

Almost half of New Yorkers with disabilities are Medicaid consumers, which pays for HCBS and institutional care. However, only institutional placement data has been publicly available for more than a decade, leaving lawmakers with little information about the scope and needs of CDPA and home care. Passing A.1926A./S.1683A would bring much-needed transparency and integrity to New York's Medicaid LTC system and inspire new approaches to increase access to HCBS for all consumers who desire to live and receive care at home. Please contact Governor Hochul and tell her to sign A.1926.A/S.1683A today.

If you are interested in disability advocacy issues like this one, contact Colleen Downs, Systems Advocate at:

colleen@ncci-online.com

518-563-9058 Ext. 110

The Mission of the North Country Center for Independence is to help people with disabilities to live more independent and productive lives, and promote better policies and community understanding of disability issues. NCCI serves people with disabilities, families, and the community on issues related to physical and mental disabilities. NCCI is led and staffed mostly by people with disabilities. It is one of the 41 Independent Living Centers in New York State. There are also hundreds of similar centers throughout the United States. NCCI serves Clinton and Essex Counties, New York.

Action Alert: Call Governor Hochul to Support Access to Home

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From The New York Association on Independent Living ...

We have just heard that our Access to Home Data Reporting bill, A.1686 (Hunter) and S.3139 (Mannion), is on the Governor's desk for signature. She now has 10 days to take action. We need your support by calling the Governor’s office and urging that she sign this bill into law! This bill will provide valuable information about the program to help improve its effectiveness and inform our advocacy for additional funding.

  1. Call the Governor at: 1-518-474-8390

  2. Say, "I'm calling to ask Governor Hochul to sign the Access to Home Data Reporting bill A.1686 and S. 3139. The bill has just reached her desk and this is an important issue for people with disabilities in New York. Thank you!"

A.1686 / S.3139 requires NYS Homes and Community Renewal (HCR) to provide an annual report on the New York access to home programs. Access To Home is an important program administered by HCR which provides home modifications to low-income households to keep them at home and out of institutions. Often, basic modifications like the ramp to a front door can be the difference between someone being able to leave and being homebound or having to go into a nursing home. Most of the housing in New York State was not designed to meet people’s needs throughout their life span, so most homes need to be modified as one ages or becomes disabled. As such, this program can play an important role in keeping people at home.

Access to Home has been severely underfunded for many years. As a result, many parts of the State do not receive funding. The regions of the State that receive funding receive very limited funds, limiting the number of projects statewide. Limited data is available to assess if the program is adequately funded. A.1686 / S.3139 would compel HCR to report on key data on an annual basis and post it on their website so it is available to the public.

This data includes:

  • The number of contracts the corporation entered into with eligible applicants and the amount of funding both awarded and expended by successful applicant;

  • The number of projects each eligible recipient completed;

  • The types of projects completed by each eligible recipient, including the average cost of each type of project;

  • The geographic diversity and demographic information of the beneficiaries of each completed project;

  • The unmet demand for access to home programs who applied for funding through an access to home program;

  • How many persons with eligible properties were denied and the demographic information regarding such denied individuals;

  • The average timeline for completion of each project.

Such data is critical to bring much-needed transparency to a program that plays such a critical role in keeping people out of institutions. This data will provide lawmakers and advocates alike a better idea of who is being served under the program and where unmet needs still exist.

If you are interested in disability advocacy issues like this one, contact Colleen Downs, Systems Advocate at:

colleen@ncci-online.com

518-563-9058 Ext. 110

The Mission of the North Country Center for Independence is to help people with disabilities to live more independent and productive lives, and promote better policies and community understanding of disability issues. NCCI serves people with disabilities, families, and the community on issues related to physical and mental disabilities. NCCI is led and staffed mostly by people with disabilities. It is one of the 41 Independent Living Centers in New York State. There are also hundreds of similar centers throughout the United States. NCCI serves Clinton and Essex Counties, New York.

Weekly Disability Reading List

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Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is posted every day.

Ady Barkan, Health Care Activist Spurred by His Illness, Dies at 39 -- Mike Ives, New York Times - November 2, 2023

The disability and health care advocacy communities lost a uniuqe and powerful advocate last week.

Selma Blair Sewed a Hidden Message Into Her Red-Carpet Cardigan -- Hanna Lustig, Glamour - November 7, 2023

One of the most notable examples of a celebrity using their own disability to raise awareness in a creative, and fundamentally selfless way.

How the Safari Industry Is Getting More Accessible — and Making Dream Trips Possible for Travelers With Disabilities -- Sucheta Rawal, Travel + Leisure - November 4, 2023

No experience is beyond the scope of accessibility and disability inclusion.

Weekly featured video on NCCI’s home page: www.ncci-online.com

Celebrating disability As part of human diversity | CATALINA DEVANDAS AGUILAR | TEDxGeneva

Paws, Claws and Aww's for Independence - Our 2024 Pet Calendar

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Paws, Claws and Aww's for Independence, 2024 Calendar - Autumn outdoor scene with two horses standing nose to nose

Email your order to: mindy@ncci-online.com

Looking for a good Holiday gift this year? Consider this 2024 pet calendar from the North Country Center for Independence!

We are selling them now for $20 each. Each calendar has cute photos of NCCI staff pets, plus information throughout the year on disability history, disability rights, and Independent Living, And the funds we raise directly support our programs and services for people with disabilities in the North Country.

Email your order to: mindy@ncci-online.com

Buy our pet calendar today and help support people with disabilities! You can pay by credit card, check, Venmo, or cash. Email mindy@ncci-online to purchase -- or visit NCCI or Koffee Kat in Plattsburgh to buy a calendar in person.

Action Alert: Tell The Department of Labor to END Subminimum Wage

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Action Alert in bold white letters on a red gradient background

From the National Coumcil on Independent Living ...

The Department of Labor is conducting a review of the section 14(c) program and the payment of subminimum wages for people with disabilities. They have an upcoming public engagement sessions on November 15, 2023. We're hearing that so far there are many comments in favor of continuing subminimum wages, so we do need you to speak up!

Click here to register for the listening session

The Independent Living community has long opposed the use of 14(c) certificates to pay disabled people subminimum wages. Continuing this program perpetuates the discriminatory practice and stereotypes that people with disabilities are not capable of fully participating in the labor market and their communities as a whole.

Since their inception, Centers for Independent Living have played a vital role in assisting consumers with diverse disabilities in transitioning to competitive integrated employment. Employment support can be woven into all 5 core services that CILs are mandated to provide. CILs have demonstrated success providing job coaching and training, as well as the independent living skills training and supports necessary to maintain employment.

We need advocates to speak against the practice of paying people with disabilities subminimum wage.

If you are able to register and sign up to speak, please let us know! If you register or if you have any questions, please email NCIL Director of Advocacy and Public Policy Jessica Podesva at jessica@ncil.org.

If you are interested in disability advocacy issues like this one, contact Colleen Downs, Systems Advocate at:

colleen@ncci-online.com

518-563-9058 Ext. 110

The Mission of the North Country Center for Independence is to help people with disabilities to live more independent and productive lives, and promote better policies and community understanding of disability issues. NCCI serves people with disabilities, families, and the community on issues related to physical and mental disabilities. NCCI is led and staffed mostly by people with disabilities. It is one of the 41 Independent Living Centers in New York State. There are also hundreds of similar centers throughout the United States. NCCI serves Clinton and Essex Counties, New York.

Weekly Disability Reading List

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Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is posted every day.

What Are You Looking At? Ableist Abuse in Public Spaces -- Harrie Larrington-Spencer, Disability Visibility Project - October 29, 2023

Reflections on how people react to our disabilities in everyday life.

Accessibility Advocates Oppose Disability Simulations -- Angela Tupper, Skift Meetings - October 25, 2023

Important perspectives on "disability for a day" and similar "disability simulation" exercises.

People With Disabilities Want To Work — But It’s Complicated -- Andrew Pulrang, Forbes.com, October 29, 2023

Why employment goals can be so complex for people with disabilities.

Weekly featured video on NCCI’s home page: www.ncci-online.com

The significance of an enabling environment for those with disabilities | Temitope Okupe | TEDxLagos

Action Alert: Tell Congress to Pass the HCBS Relief Act!

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From The Arc ...

Tell Congress to Pass the HCBS Relief Act!

Exciting news! Congress introduced a new bill that would increase desperately needed funding for people with disabilities to live in their communities.

The Home and Community-Based Services (HCBS) Relief Act of 2023 was introduced in Congress by Senator Bob Casey (D-PA). The bill would provide two years of additional Medicaid funds to:

  • Improve access to HCBS by increasing direct care worker pay and benefits;

  • Decrease the number of people on waiting lists for HCBS (currently over 650,000!); and

  • Pay for assistive technologies, staffing, and other costs that facilitate community integration.

CLICK THIS LINK TO take action now to support this important bill, which could help address the workforce crisis and decrease waiting lists for HCBS.

Why is the HCBS Relief Act needed?

Many people with disabilities are eligible for Medicaid long-term services and supports to help with everyday needs, such as eating, bathing, dressing, and traveling to work, school, or appointments. Most people want to receive these services in their own homes.

During the COVID-19 pandemic, states received extra funding for home and community-based services. This helped providers retain workers and allowed states to provide HCBS to more people. This additional funding is ending, which means many people will lose access to HCBS. Families who need home care will need to make hard choices to care for their loved ones at home.

Send a message to your members of Congress in a few easy steps, and ask them to once again provide states with extra HCBS funding to help people with disabilities thrive in their own homes and communities!

If you are interested in disability advocacy issues like this one, contact Colleen Downs, Systems Advocate at:

colleen@ncci-online.com

518-563-9058 Ext. 110

The Mission of the North Country Center for Independence is to help people with disabilities to live more independent and productive lives, and promote better policies and community understanding of disability issues. NCCI serves people with disabilities, families, and the community on issues related to physical and mental disabilities. NCCI is led and staffed mostly by people with disabilities. It is one of the 41 Independent Living Centers in New York State. There are also hundreds of similar centers throughout the United States. NCCI serves Clinton and Essex Counties, New York.

Action Alert: The Disaster Relief Medicaid Act (DRMA)

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From the DRMA bill announcement by Senator Bob Casey ...

What will the Disaster Relief Medicaid Act do?

The Disaster Relief Medicaid Act would ensure that individuals eligible for Medicaid who are forced to relocate due to a disaster can continue to access their Medicaid-supported services. This legislation would designate an individual who resides in an area covered under a national disaster or public health emergency declaration as a “Relief-Eligible Survivor” and allow them continued Medicaid coverage.

The Disaster Relief Medicaid Act provides a limited time, 100 percent federal match for displaced individuals and technical assistance and support for states to develop strategies to respond to an influx of out-of-state recipients. The bill also creates a grant program to help states develop an emergency response corps to provide HCBS.

For more information or to co-sponsor, contact: Michael Gamel-McCormick (michael_gamel-mccormick@aging.senate.gov or Emily Franzosa (emily_franzosa@aging.senate.gov).

If you are interested in disability advocacy issues like this one, contact Colleen Downs, Systems Advocate at:

colleen@ncci-online.com

518-563-9058 Ext. 110

The Mission of the North Country Center for Independence is to help people with disabilities to live more independent and productive lives, and promote better policies and community understanding of disability issues. NCCI serves people with disabilities, families, and the community on issues related to physical and mental disabilities. NCCI is led and staffed mostly by people with disabilities. It is one of the 41 Independent Living Centers in New York State. There are also hundreds of similar centers throughout the United States. NCCI serves Clinton and Essex Counties, New York.

Weekly Disability Reading List

/

Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is posted every day.

Winners announced for Excellence in Disability Reporting awards -- National Center on Disability and Journalism - October 25, 2023

This article includes links to the award-winning stories. It's encouraging to see how much good journalism is being done on disability issues, much of it by journalists who have disabilities themselves.

The Best Walkers -- Richard Eisenberg, The New York Times: Wirecutter - July 19, 2023

"Wirecutter" is the New York Times' product review column. They test products in various categories and give detailed recommendations at various price levels. It's good to see them review adaptive equipment for people with disabilities.

I'm non verbal, but that won't stop me from speaking Maori -- Mahi Tahi Media, Re: News - March 17, 2021

A fascinating story of a non-speaking New Zealand woman working to make her native Maori language accessible to herself and others with speech disabilities.

Weekly featured video on NCCI’s home page: www.ncci-online.com

Creating Inclusive Workplaces for All | Catarina Rivera | TEDxRolandPark