North Country Center for Independence North Country Center for Independence

Health insurance sticker shock begins as shutdown battle over subsidies rages

From the Washington Post:

Millions of Americans are already seeing their health insurance costs soar for 2026 as Congress remains deadlocked over extending covid-era subsidies for premiums.

Doctor holding stethescope

The bitter fight sparked a government shutdown at the start of October. Democrats refuse to vote on government-funding legislation unless it extends the subsidies, while Republicans insist on separate negotiations after reopening the government. Now lawmakers face greater pressure to act as Americans who buy insurance through the Affordable Care Act are seeing, or about to see, the consequences of enhanced subsidies expiring at the end of the year.

Healthcare.gov — the federal website used by 28 states — is expected to post plan offerings early next week ahead of the start of open enrollment in November. But window shopping has already begun in most of the 22 states that run their own marketplaces, offering a preview of the sticker shock to come.

Premiums nationwide are set to rise by 18 percent on average, according to an analysis of preliminary rate filings by the nonpartisan health policy group KFF. That, combined with the loss of extra subsidies, have left Americans with the worst year-over-year price hikes in the 12 years since the marketplaces launched.

Nationally, the average marketplace consumer will pay $1,904 in annual premiums next year, up from $888 in 2025, according to KFF.

The situation is particularly acute in Georgia, which recorded the second-highest enrollment of any state-run marketplace this year and posted prices for 2026 earlier in October. About 96 percent of marketplace enrollees in Georgia received subsidies this year, according to the Center on Budget and Policy Priorities, a liberal think tank that supports extending the subsidies.

Now Georgians browsing the state website are seeing estimated monthly costs double or even triple, depending on their incomes, as lower subsidy thresholds resume.

“We have people saying they will have to choose between their monthly premiums and mortgage,” said Natasha Taylor, deputy director of Georgia Watch, a consumer advocacy group.

For example, a family of four earning $82,000 a year in Georgia could see their annual premium double to around $7,000 for a plan with midrange coverage, according to a CBPP analysis. If that family earned at least $130,000, they would have to pay the full cost of the annual premium, about $24,000 instead of $11,000.

It’s a similar story in other states, where people in higher income tiers will see especially big premium increases as they become ineligible for subsidies. A 60-year-old couple earning $85,000 may have to pay $31,000 for a plan in Kentucky, $28,000 for a plan in Oregon and $44,000 for a plan in Vermont, according to CBPP.

If Congress doesn’t extend the extra subsidies, Georgia could lose around 340,000 people from its 1.5 million-person marketplace, according to an estimate by nonpartisan advocacy group Georgians for a Healthy Future.

Couple at kitchen table paying bills

The enhanced subsidies had fully covered monthly premiums for millions of lower-income people in the marketplaces. Many of them will have to start kicking in some of their own money starting Jan. 1, while people with higher incomes will see their monthly subsidies shrink. People earning more than 400 percent of the federal poverty line will no longer be eligible for subsidies at all.

The political fallout in Georgia has already begun to reverberate. Rep. Marjorie Taylor Greene (R-Georgia) broke with her party to demand an extension of subsidies, noting her adult children’s premiums are set to double. Greene’s office didn’t respond to a request for comment.

Sen. Jon Ossoff, considered the most vulnerable Democratic incumbent in next year’s midterms, has seized on the issue of rising premiums. An Ossoff spokesman said the senator wants the subsidies extended, pointing to polling showing a majority of Georgians feel the same.

Republican Gov. Brian Kemp, who championed the state’s marketplace, didn’t respond to a request for comment.

Atlanta resident Jody Fieulleteau, 31, said she has been paying $160 a month for a subsidized plan on Georgia’s marketplace. She makes about $40,000 a year styling hair and providing behavioral therapy. She has yet to complete an application to see quotes for plans next year, but her monthly premium is likely to nearly double based on her age, income and Zip code.

Fieulleteau said she rushed to schedule a surgery next week for a problem related to menstruation because she’s concerned about having insurance.

“I’m feeling like I need to get everything done this year because I don’t know what next year is going to look like,” she said in a phone interview.

Taylor, of Georgia Watch, said she finds that consumers often don’t understand that their plans are subsidized, which makes it difficult to explain that the pricey plans they see now could become cheaper if Congress votes to extend the subsidies.

“For your average consumer, they look at the bottom line. What’s my out-of-pocket max,” Taylor said. “I don’t think they’re looking at the minutiae of why their premium is what it is.”

The rising insurance costs highlight the political difficulties faced by Washington lawmakers.

The Congressional Budget Office, the legislature’s nonpartisan bookkeeper, has estimated nearly 4 million fewer people will have marketplace plans a decade from now if the extra subsidies expire.

Republicans say the premium assistance — intended to help people be insured during the coronavirus pandemic — are just a Band-Aid for a failure of the Affordable Care Act to rein in the costs of plans. They also say the subsidies were so generous they incentivized fraud, pointing to a CBO estimate that 2.3 million enrollees improperly claimed a subsidy this year.

But 13 House Republicans who face competitive reelection campaigns next year wrote to House Speaker Mike Johnson (R-Louisiana) on Tuesday asking him to consider extending premium assistance.

“Millions of Americans are facing drastic premium increases due to shortsighted Democratic policymaking,” they wrote. “While we did not create this crisis, we now have both the responsibility and the opportunity to address it.”

Sen. Patty Murray (D-Washington) said in a news conference that she heard from families whose premiums are doubling as window shopping started in her state Tuesday. She said she heard similar stories from Idaho and Montana, noting most people who rely on premium assistance live in red states.

“Families are logging on, looking for health coverage for next year, and coming face to face with massive price hikes because Republicans downright refuse to work with us to do something about it,” Murray said.

Insurers have partially blamed the premium hikes on the expiration of the subsidies, saying they’ll cause healthy people to drop coverage, leaving a sicker, more expensive pool of customers behind. Insurers have also cited higher drug and hospital prices, expensive weight-loss drugs and medical inflation as reasons for raising premiums.

But if Congress acts to extend the subsidies, even after open enrollment begins Nov. 1, some plans may be willing to lower premiums, said David Merritt, senior vice president of external affairs at the Blue Cross Blue Shield Association, whose member plans are sold in all marketplaces. Adjusting rates lower would get more complicated after Dec. 31, he said.

Even if Congress does extend the subsidies, consumer advocates say damage has already been done.

Many people will visit the insurance marketplaces and decide to forgo coverage after seeing pricey 2026 plans, they said, and not revisit their decision even if subsidies are restored.

Millions of Americans are already seeing their health insurance costs soar for 2026 as Congress remains deadlocked over extending covid-era subsidies for premiums.

The bitter fight sparked a government shutdown at the start of October. Democrats refuse to vote on government-funding legislation unless it extends the subsidies, while Republicans insist on separate negotiations after reopening the government. Now lawmakers face greater pressure to act as Americans who buy insurance through the Affordable Care Act are seeing, or about to see, the consequences of enhanced subsidies expiring at the end of the year.

Healthcare.gov — the federal website used by 28 states — is expected to post plan offerings early next week ahead of the start of open enrollment in November. But window shopping has already begun in most of the 22 states that run their own marketplaces, offering a preview of the sticker shock to come.

Premiums nationwide are set to rise by 18 percent on average, according to an analysis of preliminary rate filings by the nonpartisan health policy group KFF. That, combined with the loss of extra subsidies, have left Americans with the worst year-over-year price hikes in the 12 years since the marketplaces launched.

Nationally, the average marketplace consumer will pay $1,904 in annual premiums next year, up from $888 in 2025, according to KFF.

The situation is particularly acute in Georgia, which recorded the second-highest enrollment of any state-run marketplace this year and posted prices for 2026 earlier in October. About 96 percent of marketplace enrollees in Georgia received subsidies this year, according to the Center on Budget and Policy Priorities, a liberal think tank that supports extending the subsidies.

Now Georgians browsing the state website are seeing estimated monthly costs double or even triple, depending on their incomes, as lower subsidy thresholds resume.

“We have people saying they will have to choose between their monthly premiums and mortgage,” said Natasha Taylor, deputy director of Georgia Watch, a consumer advocacy group.

For example, a family of four earning $82,000 a year in Georgia could see their annual premium double to around $7,000 for a plan with midrange coverage, according to a CBPP analysis. If that family earned at least $130,000, they would have to pay the full cost of the annual premium, about $24,000 instead of $11,000.

It’s a similar story in other states, where people in higher income tiers will see especially big premium increases as they become ineligible for subsidies. A 60-year-old couple earning $85,000 may have to pay $31,000 for a plan in Kentucky, $28,000 for a plan in Oregon and $44,000 for a plan in Vermont, according to CBPP.

If Congress doesn’t extend the extra subsidies, Georgia could lose around 340,000 people from its 1.5 million-person marketplace, according to an estimate by nonpartisan advocacy group Georgians for a Healthy Future.

The enhanced subsidies had fully covered monthly premiums for millions of lower-income people in the marketplaces. Many of them will have to start kicking in some of their own money starting Jan. 1, while people with higher incomes will see their monthly subsidies shrink. People earning more than 400 percent of the federal poverty line will no longer be eligible for subsidies at all.

The political fallout in Georgia has already begun to reverberate. Rep. Marjorie Taylor Greene (R-Georgia) broke with her party to demand an extension of subsidies, noting her adult children’s premiums are set to double. Greene’s office didn’t respond to a request for comment.

Sen. Jon Ossoff, considered the most vulnerable Democratic incumbent in next year’s midterms, has seized on the issue of rising premiums. An Ossoff spokesman said the senator wants the subsidies extended, pointing to polling showing a majority of Georgians feel the same.

Republican Gov. Brian Kemp, who championed the state’s marketplace, didn’t respond to a request for comment.

Atlanta resident Jody Fieulleteau, 31, said she has been paying $160 a month for a subsidized plan on Georgia’s marketplace. She makes about $40,000 a year styling hair and providing behavioral therapy. She has yet to complete an application to see quotes for plans next year, but her monthly premium is likely to nearly double based on her age, income and Zip code.

Fieulleteau said she rushed to schedule a surgery next week for a problem related to menstruation because she’s concerned about having insurance.

“I’m feeling like I need to get everything done this year because I don’t know what next year is going to look like,” she said in a phone interview.

Taylor, of Georgia Watch, said she finds that consumers often don’t understand that their plans are subsidized, which makes it difficult to explain that the pricey plans they see now could become cheaper if Congress votes to extend the subsidies.

“For your average consumer, they look at the bottom line. What’s my out-of-pocket max,” Taylor said. “I don’t think they’re looking at the minutiae of why their premium is what it is.”

The rising insurance costs highlight the political difficulties faced by Washington lawmakers.

The Congressional Budget Office, the legislature’s nonpartisan bookkeeper, has estimated nearly 4 million fewer people will have marketplace plans a decade from now if the extra subsidies expire.

Republicans say the premium assistance — intended to help people be insured during the coronavirus pandemic — are just a Band-Aid for a failure of the Affordable Care Act to rein in the costs of plans. They also say the subsidies were so generous they incentivized fraud, pointing to a CBO estimate that 2.3 million enrollees improperly claimed a subsidy this year.

But 13 House Republicans who face competitive reelection campaigns next year wrote to House Speaker Mike Johnson (R-Louisiana) on Tuesday asking him to consider extending premium assistance.

“Millions of Americans are facing drastic premium increases due to shortsighted Democratic policymaking,” they wrote. “While we did not create this crisis, we now have both the responsibility and the opportunity to address it.”

Sen. Patty Murray (D-Washington) said in a news conference that she heard from families whose premiums are doubling as window shopping started in her state Tuesday. She said she heard similar stories from Idaho and Montana, noting most people who rely on premium assistance live in red states.

“Families are logging on, looking for health coverage for next year, and coming face to face with massive price hikes because Republicans downright refuse to work with us to do something about it,” Murray said.

Insurers have partially blamed the premium hikes on the expiration of the subsidies, saying they’ll cause healthy people to drop coverage, leaving a sicker, more expensive pool of customers behind. Insurers have also cited higher drug and hospital prices, expensive weight-loss drugs and medical inflation as reasons for raising premiums.

But if Congress acts to extend the subsidies, even after open enrollment begins Nov. 1, some plans may be willing to lower premiums, said David Merritt, senior vice president of external affairs at the Blue Cross Blue Shield Association, whose member plans are sold in all marketplaces. Adjusting rates lower would get more complicated after Dec. 31, he said.

Even if Congress does extend the subsidies, consumer advocates say damage has already been done.

Many people will visit the insurance marketplaces and decide to forgo coverage after seeing pricey 2026 plans, they said, and not revisit their decision even if subsidies are restored.

Read More
North Country Center for Independence North Country Center for Independence

Take action! Tell Congress to protect the Office of Special Education and Rehabilitative Services, Housing and Healthcare Programs

On Friday, October 10th, the administration laid off more than 4,000 federal workers in the U.S. Department of Education (ED), Housing and Urban Development (HUD), Health and Human Services (HHS), and four other agencies, including most of the staff at ED that provide support for disabled children and adults.

stacks of books
  • Layoffs at ED include nearly all staff in the Department of Education's Office of Special Education and Rehabilitative Services (OSERS). OSERS oversees both the Office of Special Education Programs (OSEP), which supports disabled children from birth to age 21, and the Rehabilitation Services Administration (RSA), which assists states and other agencies to provide services to disabled teens and adults to increase their employment, independence, and integration.

  • Layoffs at HUD include staff in the Office of Public and Indian Housing and the Office of Fair Housing and Equal Opportunity (FHEO) —the division responsible for investigating discrimination and enforcing the Fair Housing Act. The entire fair housing staff at HUD's San Francisco regional office (which covers California, Nevada, and Arizona) reportedly received layoff notices. These cuts will directly impact Fair Housing Act enforcement. Notably, complaints alleging discrimination based on disability account for 52.61% of all fair housing complaints, underscoring that this is deeply a disability rights issue. The Office of Public and Indian Housing inspects rental housing to ensure it is decent, safe and sanitary for residents, including disabled people.

  • Layoffs at HHS include staff at the Substance Abuse and Mental Health Services Administration (SAMHSA)—which supports programs addressing mental illness and addiction—as well as personnel focused on disease outbreak response (CDC) and disaster preparedness (Administration for Strategic Preparedness and Response). The cuts at SAMHSA are particularly alarming, as they may undermine state safety nets for people with mental health and substance use conditions. SAMHSA also oversees the 988 suicide prevention hotline, which could be affected by these reductions.

Federal agency staff and programs at ED, HUD and HHS provide funds to states, schools and local agencies. They provide guidance and oversight to ensure states and local agencies and orgs are following laws important to the disability community like the the Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act of 1973 Act, the Workforce Innovation and Opportunity Act (WIOA) and the Fair Housing Act. They collect data and national reports to compare and measure progress. These cuts will significantly harm disabled people, especially those facing additional barriers, and interfere with our rights to a free and appropriate education; affordable, accessible housing free from discrimination; and access to mental health services and public health programs that keep us all safe and living in our communities.

“These reductions are not a surprise — they were clearly outlined in Project 2025,” said Michelle Uzeta, Interim Executive Director of DREDF. “This Administration is moving hastily to advance its agenda of dismantling the federal workforce, targeting the people and agencies that provide essential services to disabled and multiply marginalized communities. It's disgraceful.”

Read More
North Country Center for Independence North Country Center for Independence

OMB Virtual Forums: Learn How Federal Actions Could Impact NY’s Mental Health Systems

The New York State Office of Mental Health is hosting a series of forums to discuss the recent federal actions and plan for potential impacts on New York’s mental health system. These forums – five virtual and one in-person – follow two town hall meetings that were hosted by the agency this summer, and are designed to gather feedback from provider agencies, associations, advocacy organizations, and county leadership.

 

One virtual forum is slated for each OMH region and there will be one in-person discussion in Albany:

 

A group of people listening at a forum
  • Western New York Region

 

  • Hudson River Region

 

  • New York City Region

 

  • Long Island Region

 

  • Central New York Region

_________________________________________________

 

  • Albany In-Person Forum

    • 9:30 a.m. to 11:30 a.m., Wednesday, Nov. 19

    • Capital Region BOCES, 900 Watervliet-Shaker Rd., Albany 12205

    • In-Person Only Registration: https://redcap.link/nov19omhforum

 

Each forum will cover the same content, featuring an opening presentation, followed by small break-out group discussions. During the break-out discussions, an OMH facilitator will ask participants specific questions aimed at planning ahead to help New Yorkers maintain coverage and access to care, provide technical support to help agencies maintain revenue streams, and discuss other topics related to the federal actions.

 

IMPORTANT NOTE: Attendance will be limited at both the virtual and in-person meetings to ensure the break-out groups are small. Advanced registration is required to join, for your applicable region. Please limit attendance to those who will be able to communicate during these discussions organizationally. OMH staff attendance is limited to those supporting the presentation or break-out groups. 

 

Questions may be directed to Planning@omh.ny.gov.


Read More
North Country Center for Independence North Country Center for Independence

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:

 

 

 

Read More
North Country Center for Independence North Country Center for Independence

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.

Read More
North Country Center for Independence North Country Center for Independence

Your Voice Matters: Help Shape New York’s Updated Olmstead Plan

Alt text: Decorative image with a bullhorn and a sign that says “News”.

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.

Read More
North Country Center for Independence North Country Center for Independence

Nursing Home Staffing Mandate Delayed Until 2034

Alt Text: Clip art depicting women and men in business attire.

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/

Read More
North Country Center for Independence North Country Center for Independence

Keep up with Long Term Care Updates

Image of a LTC staff member with a resident.

LTC Community Coalition website

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!

Read More
North Country Center for Independence North Country Center for Independence

Save #CDPAP: Your Story Matters!

Alt Text: Image that states “call to action” with a bullhorn.

woman in wheelchair sitting at counter

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.

Read More
North Country Center for Independence North Country Center for Independence

Sign up for the NCCI Halloween Trivia Fundraiser

Alt Text: Decorate image that says “Trivia”

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.

Trivia poster

Questions? Click here.

Sponsorship opportunities can be found here.

Sponsor flyer
Read More
North Country Center for Independence North Country Center for Independence

How Medicaid cuts could lead to loss of coverage for millions

Alt Text: Decorative image for Medicaid with a stethoscope.

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/

Read More
North Country Center for Independence North Country Center for Independence

Think You Won’t Need Medicaid? Think Again: When Long-Term Care Becomes Personal

Alt Text: Decorate image for Medicaid.

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.

Image of a senior woman washing carrots over the sink.

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

 

Woman walking down a hallway with her walker.

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

Sign that says act.

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.

Read More
North Country Center for Independence North Country Center for Independence

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.

Facebook

Read More
North Country Center for Independence North Country Center for Independence

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!

Read More
North Country Center for Independence North Country Center for Independence

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.

two people pushing two puzzle pieces together

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

Read More
North Country Center for Independence North Country Center for Independence

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.

Write To Your Officials Now

Read More
North Country Center for Independence North Country Center for Independence

Support for Alzheimer's Caregivers Fosters Meaningful Connections

a group of 4 seniors sitting together

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.

Read More
North Country Center for Independence North Country Center for Independence

Sending Isolated Seniors Letters and Brighten Their Days!

Alert!

Image of brightly colored letters on a table

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/.

Read More
North Country Center for Independence North Country Center for Independence

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.

Read More