Action Alert: Update SSI's Asset Limits

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From United Spinal Association ...

So much has changed since 1989. One thing that has not changed is the asset limits for Supplementary Security Income (SSI) - $2,000 for an individual and $3,000 for a couple.

SSI is a lifeline for millions of people with disabilities in the United States. Not only does it provide some income support, but the Medicaid eligibility it provides is so crucial for so many. However, the lack of an update to the asset limit since 1989 has trapped those on SSI in effective poverty - and nobody should be trapped in poverty because they have a disability. It's long past time this was addressed.

Thankfully, momentum is building to finally fix this. The SSI Savings Penalty Elimination Act (H.R. 5408/S. 2767) has been introduced by members of Congress from both parties in both the House of Representatives and the Senate. A wide coalition of supporters, including disability organizations, businesses, and religious groups, have mobilized to tell Congress to pass this legislation.

Click Here To Support the SSI Savings Penalty Elimination Act

This bill would raise the SSI asset limit to $10,000 for an individual and $20,000 for a couple and then update that each year for inflation. This would allow people on SSI to be able to save for emergencies, remove a barrier to employment, and make it easier for people with disabilities to find safe, stable housing.

What we need to do now is contact our Representatives and Senators to ask them to cosponsor this important bill that would change the lives of so many. If you have trouble with the button above, you can click the link here.

Thanks,

Steve Lieberman

Director, Advocacy & Policy, United Spinal Association

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: Addressing Disparities in Funding for Community Habilitation Services

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From the Southern Tier Independence Center in Binghamton, New York ...

Overview

We, the undersigned advocates and concerned citizens from across our state, are united in urging the State Office of People with Developmental Disabilities, the Department of Health, and Governor Hochul's administration to take decisive action in support of equitable funding and recognition for Community Habilitation services. The challenges faced by individuals with intellectual and developmental disabilities (IDD) and their caregivers necessitate immediate reforms.

To: Commissioner Neifeld, Office of People with Developmental Disabilities; Department of Health; Governor Hochul

Introduction

The Community Habilitation Equity Coalition (CHEC) is a group of Community Habilitation providers, Care Coordination Organizations (CCOs), Direct Support Professionals (DSPs), individuals receiving services, and parents and family members from across NYS. CHEC’s mission is to advocate for equity in Community Habilitation billing and rates, in order to achieve a living wage for DSPs. CHEC aims to secure fair and adequate funding for Community Habilitation services, ensuring individuals receiving services have the opportunity to lead independent and fulfilling lives.

Community Habilitation plays a crucial role in supporting individuals with disabilities to develop essential life skills and participate actively in their communities. These services encompass a wide range of supports, including life skills training, fostering community engagement, teaching socialization and communication skills, as well as others to enable individuals to be as self-reliant as possible. However, a significant disparity exists in the funding for Community Habilitation services compared to Supported Employment (SEMP) and Community Based Pre-Vocational (Pre-Voc) services.

Click Here To Take Action

We, the signatories of this petition, implore you to:

Address Funding Disparities

To rectify the funding disparities between Community Habilitation services, SEMP, Pre-Voc services, and other costly and segregated services, we propose the following recommendations:

1. Establish Reimbursement Rate Parity

Establish reimbursement rates for Community Habilitation services comparable to SEMP rates to ensure high-quality personalized support and coverage of non-reimbursable costs.

2. Implement Flexible Billing Mechanisms

Allow Community Habilitation providers to bill for necessary indirect service time, including behavioral supports, staff training, travel time, and documentation, similar to SEMP and Pre-Voc services, to improve service quality and alleviate financial strain.

3. Support Workforce Recruitment and Retention

Achieving rate reimbursement parity and flexible billing mechanisms will enable higher wages and better benefits for DSPs, addressing recruitment and retention challenges.

4. Promote Transition to Community Based Employment

Recognize and value Community Habilitation as a critical step toward Community Based Pre-Voc or SEMP and eventual community-based employment by acknowledging the foundational skills gained through these services.

5. Ensure Equitable Funding Allocation

Reallocate funding from segregated site-based programs, like Day Habilitation, to Community Habilitation, which is less expensive and preferred by many individuals due to its one-on-one focus.

Conclusion

Equitable funding for Community Habilitation services is crucial for DSPs to earn a living wage, promoting the independence, well-being, and integration of individuals with IDD. We urge prompt action and meaningful reforms to support individuals with disabilities who rely on these services for their well-being and inclusion into their 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: 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.

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.

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.

Action Alert: Help Us Reach 500 Fair Pay For Home Care Calls To The Governor!

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From New York Caring Majority ...

We are in a crucial period of time in the fight for Fair Pay for Home Care. Governor Hochul is crafting her 2024-2025 budget priorities as we speak and we are hearing rumors of an "austerity budget."

We must send a strong message to the Governor - that now is NOT the time for cuts, but investment in the home care workforce New Yorkers rely on.

Help us reach 500 calls to the Governor by Sept 22! Will you take 5 minutes to call Governor Hochul to urge her to include Fair Pay for Home Care in her budget priorities?

Instructions:

Step 1: Call Governor Hochul at 518-474-8390, Press 3, then press 2 to speak to a person or 1 to leave a message (NOTE: you may be on hold for a long time if you select to speak with a representative!)

Script: My name is [YOUR NAME] from [YOUR CITY/TOWN]. I am calling to urge Governor Hochul to include Fair Pay for Home Care (S3189) in her executive budget. Fair Pay for Home Care is important to me because [XXX]. Our state has the worst home care shortage in the nation because, despite recent increases, NY Pays home care workers poverty wages. This is forcing disabled New Yorkers and older adults into nursing homes because they can’t recruit workers they need to live at home. Can we count on Gov Hochul to include Fair Pay for Home Care in the executive budget? Thank you!

Step 2: Help us track our progress toward 500 calls and let us know how your calls went by submitting this form!

Once you’ve submitted the form, you will receive tools to share this action with others - we encourage you to share this action with your network so we can reach at least 500 calls during this critical period of time!

Governor Hochul acknowledged that the $3 raises she approved in last year’s budget were just a start. Then she rolled back on her commitment in this past year’s budget by slowing progress to reach $3 raises until as late as 2029. We are holding the line at nothing less than Fair Pay for Home Care.

Through our calls we can send a strong message to the Governor - that home care workers STILL make poverty wages in NY, that this is causing a dangerous home care worker shortage and that Fair Pay for Home Care must be included in next year’s budget!

In solidarity,

The NY Caring Majority Team

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.

Alert - Take Action to Oppose A995 & S2445 Assisted Suicide in NY

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From the New York Association on Independent Living, the New York Alliance Against Assisted Suicide, and the Patients Rights Action Fund:

Please take a few minutes to send a message today to your legislator asking them to oppose assisted suicide using the form on our website.

We are asking them to vote NO on assisted suicide (A995 & S2445) because suicide is not medical care.

New Yorkers deserve better access to quality care, such as in-home hospice and palliative care, not an ill-conceived public policy that puts patients at risk of mistakes, coercion, and abuse.

Here are some of the reasons why they must vote NO to assisted suicide:

  • Patients have been denied coverage for lifesaving treatment and offered assisted suicide instead.

  • Pain and suffering, or even concern about it, never make it into the top 5 reasons why patients die by assisted suicide in Oregon. Rather, the most commonly cited reasons are disability related concerns, which is why the National Council on Disability and national disability groups reject assisted suicide, including NCIL, AAPD, ADAPT, DREDF, and United Spinal.

  • Mental conditions are ignored and depressed patients receive the lethal medications.

  • Doctors make mistakes and patients who are not dying receive the prescription drugs.

  • We have a suicide epidemic in this country and overall general suicide rates have increased in Oregon since it’s been legalized.

Assisted suicide laws abandon vulnerable patients and they impact everyone’s end of life care. Lawmakers must focus their efforts on improving multidisciplinary care for terminal patients, which truly addresses patients’ concerns at the end of life instead of removing society’s care at a time when it’s needed most.

Please fill out the form on our website and urge your legislator to reject this dangerous public policy (A995 & S2445) and vote NO on assisted suicide.

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.

Alert - End Medical Debt

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Take Action on the Fair Medical Debt Reporting Act

From the New York Association on Independent Living, the End Medical Debt Campaign and CSS …

Medical debt is harming patients' physical and financial health. In New York, having unpaid medical debt can lower a patient's credit score, which can lead to trouble obtaining a loan, getting a job, and more.

The NY Senate just passed the Fair Medical Debt Reporting Act, an important step toward protecting patients from the long-term consequences of medical debt. This bill would prohibit medical debt from being collected by a consumer reporting agency or included in a consumer report.

Now we need your help urging the NY Assembly to follow the Senate's lead and pass the Fair Medical Debt Reporting Act (S4907A/A6275A).

One patient who shared his story with us, David S., had his credit score slashed in half due to medical debt. This means he can no longer buy trucks for his towing business, his main source of income.

David's story is only one of many. We can't allow this to keep happening — New Yorkers deserve better.

Please take action with us today to protect patients!

In solidarity,

Elisabeth Benjamin

CSS VP of Health Initiatives

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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.