Alert: Raise the Personal Needs Allowance: 40 years at $50 is not enough
Action Alert sign
Tell New York representatives that nursing home residents need more than a $40/month allowance by signing this petition! Use this link to sign on electronically: https://forms.office.com/g/urMXCZJy42. The petition language is included below for your reference.
Petition to Increase Personal Needs Allowance
For people who live in nursing homes, all of their income except for $50 a month goes to the nursing home to pay for their care. This $50, called a Personal Needs Allowance (PNA) has not been increased in almost 40 years; 1988. $50 is not a livable amount of money and has not kept pace with inflation or the rising cost of everyday goods.
I’m a resident / a concerned Family member / Friend / concerned citizen; The financial hardship forced upon our elders who live in nursing homes by the $50 PNA is not acceptable. They should not struggle to afford basic comforts of living, for example, clothing, toiletries, personal phone, favorite food, birthday cards, and more.
Federal law allows New York State to set the PNA up to $200 per month. Prior attempts have been made to increase the PNA. Those attempts have failed as they have not made it into the New York State Budget.
The time is now to advocate and call on New York State to include a substantial increase in the PNA along with annual adjustments for inflation!
Voice your support to increase the PNA by signing this petition:
Dignity in Dollars
Image: A chalkboard with the word “Advocacy” circled.
Why New York Must Raise the Personal Needs Allowance for Nursing Home Residents
In New York’s nursing homes, thousands of residents live on a fixed income that barely covers the essentials. For those relying on Medicaid, the monthly Personal Needs Allowance (PNA) is a stipend meant to cover non-medical expenses like toiletries, clothing, snacks, and phone service—is just $50. That’s less than $2 a day. In a state that prides itself on compassionate care, this figure is not just outdated…it’s unjust, and hasn’t changed in over 40 years.
What Is the Personal Needs Allowance?
The PNA is a portion of a Medicaid recipient’s income that is exempt from being used to pay for nursing home care. It’s intended to preserve autonomy and dignity, allowing residents to purchase personal items and maintain independence. With inflation and rising costs, $50 doesn’t go far. A haircut, a birthday card, a pair of socks… these small comforts quickly become luxuries.
The Consequences of an Inadequate Allowance
• Loss of Independence: Without enough funds, residents must rely on others for basic items. If there is no one else, they go without.
• Social Isolation: Many can't afford phone service or transportation, cutting them off from loved ones and community life.
• Emotional Toll: The inability to buy small treats or gifts can lead to feelings of helplessness and depression.
A Call for Reform
Advocates across New York, including ombudsmen, disability rights organizations, and elder care professionals are calling for the state to raise the PNA to at least $200 per month. This increase would:
• Reflect the true cost of living in 2025
• Align New York with other states that have already raised their allowances
• Reinforce the state’s commitment to person-centered care
Voices from the Field
Amy Gehrig, Ombudsman Coordinator at North Country Center for Independence (NCCI) , sees the impact firsthand:
“If a resident wants a haircut, or a perm, that alone will eat the $50 they currently get, leaving them very little for other expenses”. “Most facilities charge for a phone and cable in order to watch a show. They cannot afford both, so a choice must be made. What did you spend on your coffee this morning? I bet it was more than the $2.00 that residents receive each day.
Legislative Momentum
Bills to increase the PNA have been introduced in previous legislative sessions have stalled. The cost of inaction is far greater. Raising the PNA would require a relatively small investment from the state but yield immeasurable returns in resident well-being and mental health
How You Can Help
· Contact your local Ombudsman Coordinator, Amy Gehrig at NCCI at 518-562-1732 to learn more how to advocate.Sign the petition at: https://forms.office.com/g/urMXCZJy42
• Contact your state legislators and urge them to support an increase in the PNA.
• Share stories from nursing home residents to humanize the issue.
• Join advocacy groups pushing for elder rights and long-term care reform.
Final Thought
The Personal Needs Allowance isn’t just about money, it’s about respect. It’s about recognizing that even in institutional care, people deserve the freedom to make choices, express themselves, and live with dignity. New York has the opportunity to lead by example.
Your Voice Matters: Help Shape New York’s Updated Olmstead Plan
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New York State is updating its Olmstead Plan, and you can shape how the state protects and expands the rights of people with disabilities to live in their communities.
Written comments are being accepted until September 1st.
Email your input to: olmsteadplanny@exec.ny.gov
Summary:
· The Olmstead Plan is rooted in the Olmstead v. L.C. (1999) Supreme Court decision that states that keeping people with disabilities in institutions when they can live in the community violates the Americans with Disabilities Act (ADA).
· The Olmstead Mandate has expanded to address developmental centers, care homes, people at risk of institutionalization, and segregated employment programs.
New York’s original Olmstead Implementation Plan focused on housing, employment, transportation, and community engagement.
You can read it here: https://www.ny.gov/sites/default/files/atoms/files/Olmstead_Final_Report_2013.pdf
Change Occurs When We Demand It. Send an email focused on one or more topics:
1. Access to Services and Supports
- What services do you rely on to live in your community?
- What supports would improve your life if they were more accessible?
2. Rights Protection and System Accountability
- Have you felt your rights were eroded?
- What would help you feel confident your rights are protected?
3. Community Integration and Choice
- How inclusive and integrated is your community?
- What would make it easier for people to live in the communities of their choice?
Why This Matters
The Olmstead decision changed disability rights by recognizing that unnecessary institutionalization is a form of discrimination. As society evolves, we want to ensure the updated plan will expand access to services, community inclusion, and protection of rights for years to come.
Every voice counts—and yours could help make New York a more inclusive, equitable place to live.
Nursing Home Staffing Mandate Delayed Until 2034
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On July 4, President Trump signed the One Big Beautiful Bill Act into law, with significant impact for long-term care residents.
Understaffed facilities, higher medical debts, reduced long-term care coverage. The nation’s 1.2 million nursing home residents and their families could see these problems intensify under the sweeping tax and domestic policy law signed earlier this month.
Under the Biden administration, a federal staffing mandate for long-term care was originally established minimum staffing standards for long-term care facilities, including a requirement for a registered nurse (RN) to be on-site 24/7 and a total nurse staffing standard of 3.48 hours per resident day. This mandate aimed to improve the safety and quality of care in nursing homes across the country.
The Trump administration’s One Big Beautiful Bill prevents this staffing requirement from going into effect until 2034. To learn more, click on the link below:
https://www.aarp.org/advocacy/one-big-beautiful-bill-nursing-homes/
Keep up with Long Term Care Updates
Image of a LTC staff member with a resident.
Click on the image to go directly to the website.
Changes in Long Term Care laws and regulations impact residents and families in many ways. Sometimes we see improvements, but often these changes are cost-cutting measures that can impact the safety and comfort for the people being served.
To stay updated on these changes, you can visit the Long-Term Care Community Coalition website at https://nursinghome411.org/. This website includes education and information related to LTC and an option to receive email news and updates.
Learn about the Ombudsman Program and how you can be part of the solution!
Save #CDPAP: Your Story Matters!
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Tell your story about working with PPL.
Whatever it is, the way you tell your story can make all the difference.
Moving CDPAP management to PPL hasn't worked for many in the disability community. We can influence lawmakers by sharing our stories and speaking up. Change happens when we come together and demand it.
Your story will be sent to New York lawmakers as written testimony to explain why PPL isn't working at an upcoming hearing about the CDPAP program.
Here’s what you do (by August 18):
Share how PPL has failed you, personally.
Include in your submission:
First and last name
Title and organization (if applicable)
Address, email and telephone number.
Send with the subject line "CDPAP Hearing Testimony”
Email: steen@nysenate.gov, and CC paula@caringmajorityrising.org
Sample template:
My name is [YOUR NAME]. I live in [TOWN/CITY].
I have been a [Personal Assistant, Consumer, Designated Representative etc] in the Consumer-Directed Personal Assistance Program for the past [X] years.
CDPAP has enabled me/my loved one to…[1-2 sentences on value of the program to you, personally]
The Governor's switch to PPL has failed me in these three ways... [Describe each way in 1-2 sentences, being as specific as possible]
I am one of tens of thousands facing these issues. I call upon the Governor and the NY State legislature to stop this catastrophe before more harm is caused! Save CDPAP NOW. End the PPL monopoly and restore choice to this critical home care program!
Please feel free to reach out to Elise Nakhnikian (enakhnikian@gmail.com) if you need support with writing or editing your testimony, or Paula Tartell (paula@caringmajorityrising.org) if you have other questions about submitting your testimony.
Sign up for the NCCI Halloween Trivia Fundraiser
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Trivia enthusiasts will love our day-long trivia competition on October 25th from 10am - 8pm. You can sign up as a team of 5 for $500 or as an individual for $100 and we will pair you with others!
This is a single elimination tournament for 32 teams with prizes up to $3000.
Questions? Click here.
Sponsorship opportunities can be found here.
How Medicaid cuts could lead to loss of coverage for millions
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On July 4, President Trump signed the “One Big Beautiful Bill Act” into law, introducing major changes to Medicaid, the joint federal/state program that provides health insurance to low-income adults and families, people with disabilities, pregnant people, and seniors. Harvard T.H. Chan School of Public Health’s Benjamin Sommers, Huntley Quelch Professor of Health Care Economics, and Adrianna McIntyre, assistant professor of health policy and politics, share their reactions to the law and discuss potential consequences for Medicaid recipients and the U.S. health care system.
To learn more, click here: https://hsph.harvard.edu/news/how-medicaid-cuts-could-lead-to-loss-of-coverage-for-millions/
Think You Won’t Need Medicaid? Think Again: When Long-Term Care Becomes Personal
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Learn more about the seniors who rely on Medicaid. As a society we don’t talk about the impact to ourselves and the people we love. Stay informed to support policies that protect vital help and quality care.
Meet Mary from Upstate New York
Mary, 82, spent her life raising kids, working part-time, and caring for her husband through his illness. Her home has a small mortgage left and a lifetime of memories. But after a fall, she needed help: dressing, bathing, meals, and medical visits. The local assisted living facility quoted $4,500 per month. A nursing home? Over $100,000 a year.
Mary’s Social Security covers her mortgage and groceries, but not thousands in care costs. Medicare doesn’t cover it either. Her children both work full-time and tried to help, but simply couldn’t manage all of her needs and still support their own families. Like 62% of nursing home residents in America, Mary had only one option: to spend down her savings and apply for Medicaid.
Mary’s story is not unique. It happens every day in communities across New York—from rural towns in the North Country to cities like Buffalo, Albany, and New York City. Families are often shocked to discover how quickly care costs drain savings and how essential Medicaid is to keep their loved ones safe and healthy.
Senior woman washing carrots in her kitchen sink.
The Reality of Long-Term Care
It makes sense that we don’t want to think about it, but 70% of Americans will need long-term care at some point. That might mean a nursing home, assisted living, or in-home help like bathing and medication support. Medicare does not cover these costs beyond short rehab stays, leaving families on the hook.
And these costs aren’t small:
Assisted living: $4,500–$6,000 per month in upstate New York
Nursing homes: $100,000+ per year for a private room
Home care: $25–$30 an hour
Senior woman walking down the hall of a long term care facility.
What If You Don’t Qualify for Medicaid Yet?
Families often face heartbreaking choices before Medicaid eligibility kicks in:
Spend down savings: Families burn through retirement accounts and emergency funds just to pay for basic care.
Sell assets: Homes, cars, or family heirlooms are liquidated to afford care.
Family caregiving: Adult children cut back work hours or quit jobs to provide care themselves, often leading to lost income and emotional burnout.
Myth vs. Reality
Myth: Medicaid is just for poor people who never saved.
Reality: Most seniors who rely on Medicaid for long-term care are middle-class people who spent decades working, saving, and paying taxes. They simply cannot keep up when care costs exceed $100,000 a year.
Myth: You’ll never need it if you have Medicare.
Reality: Medicare covers hospital stays and medical treatment—not ongoing help with daily living or extended nursing home care. That’s where Medicaid steps in.
Call to Action: Protect Medicaid, Protect Families
How you can take action.
Medicaid is a lifeline for seniors, their families, and caregivers across New York. Cuts to Medicaid or new barriers could leave families like Mary’s scrambling, forced to choose between food, housing, or keeping a loved one safe.
Here’s what you can do:
Contact your state lawmakers and members of Congress. Tell them you support strong Medicaid funding for long-term care.
House of Representatives: Elise Stefanik
Email: https://stefanik.house.gov/contact
Phone: (518) 561-2324
Senate:
Chuck Shumer
Email: https://www.schumer.senate.gov/contact
Phone: (518) 431-4070
Kirsten Gillibrand
Email: https://www.gillibrand.senate.gov/contact/email-me/
Phone: (518) 431-0120
Share your own story if you’ve used Medicaid for a parent, spouse, or yourself. Personal stories change minds.
Stay informed on proposed policy changes. Small cuts today can mean fewer nursing home beds or less home-based care tomorrow.
Because someday, this might not just be Mary’s story, it might be yours.
Advocacy is needed now more than ever!
Advocacy is necessary to ensure the government policies favor all people, include individuals in the disability community.
This reel from the National Council on Independent Living is a clear overview of how the disability community can organize to advance policies that support equality for all.
FREE WEBINAR: Dementia Care in the Community 6/17/2025 @ 1pm
The Long Term Care Community Coalition is hosting a free webinar called Dementia Care in the Community on June 17 at 1 pm.
REGISTER HERE:
https://bit.ly/jun-2025-webinar
We will share new fact sheets and resources to support family members advocates, and caregivers to support high-quality, person-centered dementia. We hope to see you there!
NCCI Completes Merger with the North Country Association for the Visually Impaired
News: NCCI and NCAVI Merger Complete
PLATTSBURGH, NY - May 15, 2025 - The North Country Center for Independence (NCCI) and the North Country Association for the Visually Impaired (NCAVI) are pleased to announce the completion of their merger, following the recent filing of their Certificate of Merger on April 22, 2025. This merger represents the culmination of a strategic partnership that began in April 2022 when NCAVI first became an affiliate of NCCI.
The unified organization will retain the North Country Center for Independence name, with NCAVI programs continuing as "NCCI Vision Services." This integration strengthens services for people with disabilities throughout Clinton, Essex, Franklin, and St. Lawrence counties.
NCCI and NCAVI merger completed, depicted as two people pushing puzzle pieces together.
"This merger ensures the sustainability of critical vision services while expanding the range of resources available to all people with disabilities in our region," said Robert Poulin, Chief Executive Officer of NCCI. "By combining our expertise and resources, we're creating a more robust organization that can better advocate for and serve our community."
The merger was driven by the shared mission of both organizations to empower individuals with disabilities to live independently. It also responds to changes in state funding models that made the partnership necessary to sustain vision services in the North Country.
Amy Collin, who previously served as Executive Director of NCAVI and facilitated the initial affiliation in 2022, will continue in her role as Chief Financial Officer at NCCI, ensuring continuity of leadership and vision services programming.
"This merger represents the culmination of a thoughtful process that began three years ago," said Collin. "Our vision services team remains dedicated to our original mission, and participants will continue to receive the same high-quality services they've come to expect, with the added benefit of access to NCCI's comprehensive independent living programs."
The newly strengthened organization will offer an expanded suite of services including:
· Vision rehabilitation and training
· Assistive technology assessment and training
· Independent living skills development
· Disability rights advocacy
· Benefits advisement
EVENT: Adirondack Nature Festival for People with Disabilities
Sign saying “Coming Soon, Stay Tuned”
The second annual Nature Festival for People With Disabilities is scheduled for Saturday, August 16 from 10-4 at the Paul Smiths VIC.
To learn more, click on the following link: https://www.facebook.com/events/579296741849049/?acontext=%7B%22event_action_history%22%3A[]%7D
Action Alert: Tell Congressional Officials to Stop the Cuts – Protect Medicaid Now
Alert
The American Association of People with Disabilities needs you to contact your Representatives and Senators and urge them to REJECT any cuts to Medicaid.
You can take this action in just a few quick clicks by using AAPD's advocacy tool.
Medicaid is a critical program that millions of individuals with disabilities rely on not only to access healthcare but also for services that traditional health insurance does not cover, such as home- and community-based services.
Making $880 billion in cuts to Medicaid, as the recently passed budget resolution proposes, would have dire consequences for people with disabilities and lead to reductions in benefits and services for those who rely on Medicaid for home- and community-based services (HCBS), employment supports, and more.
Your Representatives and Senators need to hear from YOU about how these proposed cuts to Medicaid will impact people with disabilities. Any cuts to Medicaid will cut services and supports that people with disabilities rely on to accomplish their daily goals and lead lives worth living.
Please submit this form to send a letter to your Congressional Officials and tell them to reject cuts to Medicaid.
Support for Alzheimer's Caregivers Fosters Meaningful Connections
Caregivers in Essex, Franklin and Clinton Counties have a place to go to build meaningful connections! The job of caregiving can be rewarding but also mentally and physically taxing. The Alzheimer’s Disease Caregiver Support Initiative hosts such as Memory Cafes, cooking classes, pickleball and traditional support groups. Check out https://www.wehelpcaregivers.com/ to learn more.
Sending Isolated Seniors Letters and Brighten Their Days!
Alert!
Senior loneliness is a well-documented issue and has effects not only on seniors’ mental health but on their physical health as well. Letters Against Isolation aims to help this situation and spread joy by sending handwritten letters to residents of assisted living facilities and nursing homes. Since its founding, Letters Against Isolation has since expanded to serve thousands of seniors in the US, Canada, the UK and Australia!
To learn more, check out https://www.lettersagainstisolation.com/.
Alert: LTCCC Alert: Increase the Personal Needs Allowance for New York Nursing Home Residents
March 8, 2025 – The New York State legislature has introduced a bill, sponsored by Committee on Aging chair Cordell Cleare, to increase the amount of money New York nursing home residents can keep of their income to use for personal items.
The Personal Needs Allowance (PNA) in New York has been stuck at $50 per month for over three decades. The proposed legislation, S4744, would raise the PNA to a more reasonable and humane $128 for nursing home residents.
The PNA is the only monthly allowance that residents on Medicaid receive for all of their personal expenses. The current allowance falls far short of meeting the basic personal expenses of residents, limiting their ability to maintain dignity and experience a comfortable living environment. Read firsthand testimonials from residents about how this change would make a difference in their lives: https://nursinghome411.org/alert-pna-2025/.
At the federal level, the 1987 Nursing Home Reform Law set the minimum PNA rate for nursing homes residents receiving Medicaid at $30 per month, but the law allows for a rate of up to $200 per month. Many other states have increased their PNAs over the years. It is time for New York to do so, too.
Support of this legislation, S4744, would greatly contribute to the overall well-being of nursing home residents. Help us make a difference by contacting your legislators today.
NCCI joins the American Dream Employment Network!
News!
North Country Center for Independence is now a member of the American Dream Employment Network (ADEN). ADEN is a national administrative Employment Network providing services to individuals receiving Social Security Administration (SSA) disability benefits under the Ticket to Work program. For individuals receiving SSA disability benefits, the return to gainful employment can be complicated and challenging. The SSA recognizes the challenges that beneficiaries face in returning to work and, as a result, are able to offer supports through the Ticket to Work program to individuals who have the goal of achieving financial self-sufficiency. If you are receiving SSI or Social Security Disability Insurance benefits and are between the ages of 18-64 and looking for employment, Ticket to Work can be one of many work incentives to help get individuals with disabilities into the workforce. As a new Member of ADEN, we at North Country Center for Independence want to invite all of our current consumers who are receiving Social Security disability benefits to explore assigning your Ticket to Work.
Assigning your Ticket to ADEN is voluntary and there is no fee to assign your Ticket with ADEN. There is no risk involved, only benefits in assigning your Ticket with ADEN. You will continue to receive services from our agency, but as an ADEN Member, we can explore with you how the Ticket program can further expand the resources available to you to support you in your current job, assist you in finding a job and help you advance in your career. We can also assist you in understanding how best to leverage your current financial situation, and future planning for a more secure financial future. Our ADEN Ticket Specialist, Cassie Cayea, can work with you to discover if you have a Ticket available, and will also discuss with you further about the Ticket program to see if you are interested in receiving these supports - the choice is completely yours. Learn more today by scheduling a time to meet with Cassie at ccayea@ncci-online.com
To read and hear about success stories of ADEN Participants improving their financial situation, visit https://www.nationaldisabilityinstitute.org/aden/aden-success-stories/
Speak Out in Support of Meaningful Safeguards for Nursing Home Ownership
Too many nursing home residents have been placed in danger because of bad actors within the industry. Without meaningful safeguards for evaluating nursing home owners, many more will likely be harmed. Please take a moment to speak out in support of implementing and enforcing necessary ownership requirements.
ALERT: Urge NYS to Include ILC’s in Human Services COLA
Action Alert: Support ILC Funding!
No funding increase was proposed in any of the budgets for Independent Living despite the cost of everything rising so quickly. We are strongly advocating that ILCs be included in the human services cost of living adjustment (COLA) being negotiated by the Governor and Legislature. The work of ILCs is aligned with that of other human service and disability providers receiving a COLA. ILCs compete in the same labor market and have the same difficulty in recruiting and retaining staff. We need you to call the Governor and leaders in the Legislature and ask them to include ILCs in the human services COLA.
TAKE ACTION AND CALL!
Ask them to support the inclusion of ILCs in the human services COLA:
“Hello, I’m calling to ask that Independent Living Centers be included in the human services COLA. The work of ILCs is aligned with that of other human service and disability providers receiving a COLA. My local ILC is an important part of the community and they need the support of your office in getting a funding increase. Thank you.”