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!
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!
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.”
ALERT: LTCCC's Nursing Home Ratings and Reports for 15,000 nursing homes
January 16, 2025 – The Long Term Care Community Coalition (LTCCC) regularly publishes data on critical indicators of nursing home care, providing valuable insights into the quality, safety, and accountability of these facilities. Today, LTCCC is releasing new federal data on five-star ratings, ownership type, enforcement actions, and other critical information for the nearly 15,000 U.S. nursing homes in the federal CMS dataset.
This report offers user-friendly datasets that can be sorted and filtered to identify nursing homes in a location and/or category (i.e., for-profit nursing homes in Miami, Florida). The datasets contain info on facility ratings, ownership status, health inspection outcomes, family council presence, and many more important categories. We also provide a “Problem Facilities” dataset with facilities that are in the federal Special Focus Facility (SFF) Program, SFF Candidates, or assigned a one-star overall rating.
What’s new?: In this report, we introduce a new methodology for calculating expected nurse staffing to better align with the needs of residents and assess whether operators are providing sufficient staff. Previously, we used the CMS methodology, which compares nursing homes to a national average and normalizes current staffing levels—which are too often inadequate. Starting with this report, we are adopting the evidence-based McLaughlin-Harrington five-star rating methodology, which determines appropriate staffing levels based on residents' needs as identified by the facilities themselves. More information on this methodology is available at nursinghome411.org/nurse-rating-methodology.
Some ways to use this report:
View a nursing home’s ratings, citation history, and whether it is staffing up to expected levels based on resident needs.
Review a nursing home’s health deficiencies to determine whether an incident is part of a pattern or compare performance indicators for nursing homes with different characteristics (i.e., ownership type, location).
Use the slicer and filter features to evaluate nursing homes in a state or one or more counties.
Key findings:
One in four U.S. nursing homes (24.8%) is a Problem Facility: one-star nursing homes, SFFs, and SFF Candidates.
Nearly three in four nursing homes (72.7%) are for-profit facilities.
Among Problem Facilities, 86.0% are for-profit.
Average overall ratings vary significantly by state (from 2.22 in Louisiana to 3.68 in Hawaii) and by CMS Region (from 2.59 in Region 6 (Dallas) to 3.15 in Region 9 (San Francisco)).
Nearly 9% of facilities have an abuse icon, indicating a history of substantiated abuse or neglect. Note: the absence of an abuse icon does not necessarily mean the absence of abuse at a facility.
Only 5.7% of deficiencies were classified as harm or higher, including 2.3% deemed to cause immediate jeopardy. This is significant because facilities are unlikely to face penalties for violations of minimum care standards unless harm or immediate jeopardy is documented by the surveyors.
Gina Overcomes: Moving Beyond Buckets with Poles
We’d like to share a blog post from Gina Krantz who writes about her experiences living with a disability. Here she writes about the evolution of the wheelchair and her experience as a wheelchair user. We’ve linked her blog below!
https://ginaovercomes.com/im-so-happy-that-we-moved-beyond-buckets-with-poles/
Email your legislator to stop PPL and save CDPAP!
Tell your legislators to stop NY's reckless effort to close the hundreds of FIs we work with and instead, enact the CDPAP Accountability Act, sponsored by Senator Gustavo Rivera and Assemblymember Al Stirpe.
Over 1,500 messages have already been sent to the Legislature, but it is not enough.
Why is this so important? NY's effort to replace the hundreds of community-based FIs that we have worked with for years with PPL has been a disaster.
PPL and the Department of Health are telling us that "starting or completing" less than 8% of the almost 300,000 people using CDPAP one-third of the way through this process is a huge success.
Onboarding workers, a job that has always been done by FIs, will have to be done by consumers now. This means consumers will collect I-9 documents, tax documents, and worker agreements. If the consumer can't do this, then PPL says the consumer isn't capable of using CDPAP (even if they have been successfully using the program for years!!).
Consumers calling PPL are routinely hung up on by call center staff.
Other consumers who need to speak a language other than English cannot get translators. One person seeking a Polish translator was told that PPL "does not support Polish." Another seeking a Spanish translator was transferred to an Italian translator instead.
When consumers do actually get through to a PPL support person, they cannot get basic questions like wage and benefit information for PAs answered. Instead, they are met with threats like "Well, if you want to continue to receive services, you need to switch." or, "Well, if your workers want to get paid, they'll switch." The message is clear, "We don't care - you have no choice."
PPL made the private information of every PA in its system, including social security numbers and more, visible to all its subcontractors for at least 10 days. Their solution was to ask their subcontractors, essentially, "Please don't look."
Tens, or even hundreds, of thousands of workers are likely to go without pay or even lose their jobs because of the program mismanagement by PPL.
Tens of thousands, or over 100,000, consumers will likely see services disrupted.
We need to let our elected leaders know:
There is a better choice.
We can still stop this, but to make that happen your Legislators need to hear from you today. We are being told time and again that your Senators and Assemblymembers don't think this is a problem because they are not hearing from you - their constituents. So please, take one minute and email them to let them know that PPL is a disaster for NY and ask them to support the CDPAP Accountability Act, S1189(Rivera) and A2735 (Stirpe) and prioritize it in the budget.
Over 1,000 callers hit new Medicaid home care transition hotline (Spectrum News)
A new hotline assisting with the transition of a popular Medicaid home care program to one company received more than 1,000 calls on its first day, company leaders said Tuesday.
In 12 weeks, Public Partnerships LLC, will become the state's sole fiscal intermediary for its Consumer Directed Personal Assistance Program, which more than 280,000 New Yorkers rely on for home care.
PPL President Maria Perrin said Tuesday she remains confident the company can register hundreds of thousands of New Yorkers before the change takes effect April 1.
"It's good to see a steady stream of callers coming in," Perrin told Spectrum News 1. "I'm happy to report there's very little wait time, so if you're interested in calling and starting your transition, it's a good time to start doing that."
About 1,100 agents and 300 overflow staff run the company's new customer support services six days per week — aiming to enroll about 3,800 people per day to meet the April 1 deadline.
A total of 35 subcontractors, including 11 Independent Living Centers, will also assist with the transition. Lawmakers voted for the change in last year's budget to cut down on widespread program fraud and abuse.
Personal assistants continue to be concerned about their new pay rate, or rules about overtime, under PPL, which the company has not answered.
Perrin said pay will depend on location.
"The worker will get their direct rate of pay from us or one of our facilitators rather than just 'This is the rate of pay for everybody,'" she said.
Advocacy group Caring Majority Rising dispersed a flyer to CDPAP recipients over the last few weeks and encouraged them to call the hotline Monday after it opened. About 100 people from the group called in Monday.
Caring Majority Rising Lead New York State Organizer Julia Solow said the notice was sent to CDPAP users to publicize the service and get answers to their questions — not flood PPL's support center.
"We want answers for people whose lives will be completely changed by this decision," she said Tuesday. "People want answers for themselves. They didn't need questions to be given to them. They already knew what their questions were."
Perrin said only a handful of the first 1,000 calls were made by a person who did not attempt to register with PPL. But the company has an automated message that immediately warns callers of misinformation by advocates and higher-than-usual wait times.
"Unfortunately, some groups that oppose the fiscal intermediary change are spreading misinformation and have launched a coordinated effort to block our phone lines and keep people from getting the support they need," an automated voice says after calling the new support line.
Perrin said some callers refused to register with the company — like Michelle Fridley.
Fridley, of Canandaigua, was mostly paralyzed after a car accident 24 years ago, and relies on CDPAP for 24-hour care. She works with eight home health aides who don't know their new pay rate or if they can work overtime, and fears the changes will force her into a nursing home.
"Those are the questions that I need to have answered and I didn't get one of them answred yesterday," Fridley said.
PPL answered Fridley's call immediately Monday when she dialed in just before noon, but the agent could not answer her specific questions about staff hours or pay and promised someone from the company would call her back within 48 hours.
Fridley had not received a call back from the company as of late Tuesday afternoon.
"I need to know if they are going to allow overtime because that depends on the number of attendants I have — the ones that are probably going to quit," Fridley explained.
PPL must abide by the state's home care minimum wage, which is $19.10 in New York City, Long Island and Westchester and $18.10 per hour in the rest of the state.
Perrin said PPL put together a comprehensive wages and benefits package for all personal assistants.
"Pay rates for personal assistants (workers) are based on the consumer’s location and their service authorization," according to a statement from Hochul's office. "This is provided to personal assistants once they are verified. Because there is currently no centralized database to track variation in wages or benefits, the differences are not yet known."
Home care recipients who have concerns about the new company could exacerbate issues with the transition and disrupt their care if they refuse to register.
But Fridley said she will wait as long as possible before deciding to transition to PPL, and hopes lawmakers can extend the timeline this session.
Senate Health Committee chair Gustavo Rivera sponsors legislation that would delay CDPAP changes until later this year, and mandate fiscal intermediaries get a state license to combat fraud.
He expects it will be a top priority in this session's budget fight.
"It’s about recognizing that the change that they are attempting to push through is not a very thought through and not a very reasonable way to change the system," Rivera said.
Program users and caregivers must sign a memorandum of understanding to register with PPL. Consumers can see their paperwork, personal assistant information, service authorization and other data in an online portal. Consumers can also complete their transition at in-person events the company will hold around the state.
All program recipients and their home health aides must be registered with the new company before the change takes effect this spring — when nearly 700 smaller companies that have managed CDPAP will cease to exist.
The company will register new program recipients starting March 1.
https://spectrumlocalnews.com/nys/central-ny/politics/2025/01/08/over-1k-callers-hit-new-medicaid-home-care-transition-hotline
ALERT: Protect Independent Living Funding: Stop the Freeze on Federal Programs!
Protect Independent Living Funding! Stop the Freeze on Federal Funding!
Protect the Independent Living Funding: Stop the Freeze on Federal Programs
Dear Members and Allies,
NCIL is aware of the news overnight that the Trump Administration has issued a “Temporary Pause on Agency Grants, Loans and other Financial Assistance Programs.” We are currently reaching out to our contacts in Congressional offices and in the Trump Administration for guidance and information on what this means for Centers for Independent Living and Statewide Independent Living Councils. As of right now, the Payment Management System (PMS) login appears to be frozen.
How You Can Help
Your voice is powerful, and together we can make an impact. Here’s what you can do:
Take action at the NCIL Advocacy & Action Center (https://bit.ly/4g8sx0X).Select “Protect the Independent Living Funding: Stop the Freeze on Federal Programs”.
Share this Action Alert.
Tell Congress and the Trump Administration to resume funding for the Independent Living Program.
If you receive any guidance from your state or from the federal level, contact NCIL and share what you are hearing.
NCIL is working on guidance for CILs on how to respond if this freeze remains in place and we are considering options for opportunities for CIL and SILC directors to come together to discuss impact and response. If you have any questions or have any information you can share, please contact NCIL Director of Advocacy and Public Policy Jessica Podesva by email at jessica@ncil.org or by phone 202-864-4251.
In Solidarity,
NCIL
ALERT: Support the NYS Sovereign Immunity Bill
New York State's sovereign immunity from ADA lawsuits is leaving people with disabilities without legal recourse when facing discrimination. The proposed bill (SB 28) would waive this immunity, allowing individuals to sue state entities in federal court for violations of the Americans with Disabilities Act (ADA).
WHY THIS MATTERS:
Currently, New York claims immunity from ADA lawsuits in federal court, forcing people with disabilities to pursue their rights through less effective state procedures. This makes it harder to challenge discrimination and hold state agencies accountable.
THE IMPACT:
- Allows individuals to file ADA lawsuits against state agencies in federal court
- Provides stronger enforcement of disability rights
- Aligns New York with other states that have waived immunity
- Creates real consequences for ADA violations
EMAIL YOUR REPRESENTATIVES NOW:
Call your state representatives and share a story about why this matters!
Assembly Member Billy Jones: https://nyassembly.gov/mem/Billy-Jones/contact/
Senator Dan Stec: https://www.nysenate.gov/senators/daniel-g-stec/contact
Governor Kathy Hochul: https://www.governor.ny.gov/content/governor-contact-form
Alert: End Subminimum Wage for People with Disabilities
Under current law, people with disabilities can be paid below minimum wage in certain jobs or industries. This is a longstanding regulation that the Biden Administration seeks to end. Subminimum wage hinders progress for people with disabilities because it exploits workers, creates inequities, and disincentivizes employers from providing equal pay.
We can advance these changes by telling the government how important it is to end subminimum wage. The government is accepting comments until January 17, 2025. Click on the following link to read more and click the comment button to add your voice. The people have a voice, and we can use it! People with disabilities deserve equal pay!
Link: https://www.regulations.gov/document/WHD-2024-0001-0001
Alert: Tell Governor Hochul to invest in home care!
On October 1st, The Caring Majority organization delivered thousands of letters to the three most powerful decision-makers in New York State: Governor Hochul, Assembly Speaker Heastie and Senate Majority Leader Andrea Stewart-Cousins.
Our letters had a central message: now is the time to invest in home care, not destroy it with short-sighted cuts and ill-conceived “reforms.”
Today, we are asking you to join us in making three calls to help us follow up on our letters and continue to put pressure around our home care demands as we move into next year’s budget.
Governor Hochul: 518-474-8390 (NOTE! our home care worker leaders have been calling since earlier today and the line may be shut down cause of their amazing work!)
Assembly Speaker Carl Heastie: 518-455-3791
Script: Hi, my name is XXX, I’m a New Yorker and a voter calling to voice my concerns about the attack on the consumer-directed personal assistance program. CDPAP provides home care to over half of people who use home care in New York State. Your intention to hand this program over to one out-of-state corporation is reckless and will put peoples’ lives in danger. There is no way it is possible to transition 250,000 people’s home care in less than 3 months. This issue is personal to me because XXXX. You’re playing with people’s lives and you need to stop. [NAME OF LEGISLATOR] needs to meet with the Caring Majority directly to discuss this urgent matter.
Senate Majority Leader Andrea Stewart-Cousins: (518) 455-2585
Script: Hi, my name is XXX, I’m a New Yorker and a voter calling to voice my concerns about the attack on the consumer-directed personal assistance program. CDPAP provides home care to over half of people who use home care in New York State. We want to thank the Majority Leader for her past support and urge her to keep fighting. There is no way it is possible to transition 250,000 people’s home care in less than 3 months. It will put peoples’ lives at risk. This issue is personal to me because XXXX. We’d like to ask the Majority Leader to meet with Caring Majority leaders directly to discuss this urgent matter.
These calls make a difference. Our last push for calls resulted in meetings with the staff of Stewart-Cousins and Heastie. Together our community will continue to fight until we get real action and true commitments to investment in home care.
7 Things Disabled People Have To Think About Every Day by Andrew Pulrang
Having a disability is tiring. Every day you have to plan for things that other people just don’t have to. Yet, most "disability awareness" content, for Disability Pride Month and other occasions, tends to emphasize disabled peoples' capabilities and resilience, while avoiding anything that might suggest pity or inherent hardship.
There are solid reasons for this. It’s important to counteract the low expectations for disabled people that drive much of disability discrimination. Many disabled people want very much to project positivity, to the broader community and to themselves and each other as well. And it’s hard to figure out how to talk about the real barriers disabled people face, without sounding self-pitying or pleading.
But it's worth revisiting now and then exactly what makes everyday life different for people with disabilities. The point isn’t to generate pity, or even empathy exactly. The goal is to foster practical knowledge of disabled life, so disabled people's needs might be better anticipated, and so their requests for accommodation are more readily accepted and met, rather than doubted, picked apart, and denied.
PROMOTED
Every disabled person's disabilities, experiences, and needs are different. And disabled and non-disabled people are still more alike than they are different. But here are seven things disabled people have to think about everyday – things that most non-disabled people simply don't:
1. How far will I have to wheel, walk, or navigate?
When you go shopping, you have to be able to get from your car, (or subway, bus, taxi, or a friend’s car), into the grocery store, and of course back with your purchases. When you have an errand to run – like a doctor visit, business meeting, or benefits appointment – you often have to get yourself from the office you thought you were supposed to visit to the office they say you're supposed to go to. These kinds of appointments rarely go as planned, and when you have a disability, you have to plan for that too.
Wheelchair users have to worry whether the terrain will be level and smooth, or if there are stairs in the way, with or without safely constructed ramps. A lot of people with mobility disabilities do walk, but still have similar concerns about pathways, along with distance. Meanwhile, people who are blind or visually impaired need to think about navigation — how to get from place to place in unfamiliar environments that may be complex and full of unexpected barriers.
Everyday “walking around” and “taking care of business” that most people do almost without thinking takes a lot of planning and care for people with disabilities. This can be as cognitively taxing and emotionally stressful, if not more, than it is physically taxing.
2. Is there accessible, timely, reliable transportation?
Many disabled people drive and have their own accessible vehicles. But many disabled people don't. They must depend on public transportation, taxis and services like Uber and Lyft, or rides from family or friends.
When you have a disability that affects mobility, every task outside your home involves more than not just your own capabilities. It forces you to ask whether transportation provided by other people is going to be available where you are going, whether or not it's going to be on time, and if it's genuinely accessible. Despite your own best efforts, the tiniest failures by other people and transportation systems can throw all of your plans into chaos.
As a result, when you have disabilities, the smallest errands in your own town can be as complicated and exhausting as a day of air travel in crowded airports.
3. Will there be a place to sit down?
It's not so bad tiring yourself out to get somewhere if there's a place to sit and rest when you arrive. But disabled people can never be quite sure there will be a chair, a bench, or even a wall to lean against. This is an especially urgent concern for outdoor events, farmer’s markets and amusement parks, as well as large, unfamiliar buildings like hospitals, government buildings, schools, and shopping malls.
Being confident ahead of time that there will be a place to rest can make a whole outing better and more feasible. Not knowing, or knowing there won’t be suitable places to rest, can easily prompt a disabled person to curb their plans, or abruptly cut an outing short.
4. Will I be able to go to the restroom?
This is a big one, especially for wheelchair users, or anyone who needs extra space and accessibility to use the toilet in a safe and dignified way.
On the plus side, it's one of the accessibility concerns that is itself most accessible to non-disabled people. It's easy to understand. The importance is obvious. What's probably less well known is the decision-making process in which most wheelchair users have to weigh the pain and even risk of "holding it" if there isn't an accessible restroom, versus simply not going, not participating in whatever the thing is. Lack of an accessible restroom really can prevent some disabled people from eating at a restaurant, attending a meeting, voting at a polling site, or attending a family reunion.
It's also important to note that restroom accessibility is difficult to test beforehand. Wheelchair users are often told in good faith that a restaurant or event will have an accessible restroom. Only later do they find that it’s improperly designed, or not accessible enough to be usable by them, with their particular disabilities. The “accessible” restroom that isn’t accessible is a particularly frustrating, limiting and humiliating “bait and switch” that people with disabilities know all too well.
5. Will the place be crowded, noisy, and chaotic?
Anyone with difficulty walking, wheeling, or balancing has to be concerned and vigilant about the size and mood of anticipated crowds.
The worry isn't so much deliberate violence or calculated chaos. The greatest risk is the careless, inattentive, random, (or drunken), moving about of people who take for granted a certain level of physical confidence and stability. It’s people who are mostly unaware of how precarious it can be for people with disabilities to simply be safe in a confined space with a lot of other people.
This isn’t just a concern for people who use wheelchairs, canes, crutches, or walkers. Deaf and hard of hearing people have to worry about excessive noise, and sight lines to see printed instructions or Sign Language interpreting, (if it’s even provided). Blind and visually impaired people have to think about navigating crowded spaces safely too. And people with sensory issues, including many people with autism, can have widely varying tolerances for noisy crowds.
Most disabled people want to socialize. But they have a lot of extra things to think about and try to plan for when crowds are involved.
6. Will I earn or save a little too much money this month?
Not all of disabled people's worries are so physical and immediate. Some of the worst problems are bureaucratic. They are more abstract, technical, and arbitrary. But they can do far worse than ruin a disabled person’s day. They can upend a disabled person’s whole life and independence.
For instance, disabled people who depend on government benefits and healthcare, but want to work and save, have to worry about accidentally losing eligibility for support. It’s the classic disability conundrum. Not working, or working less, can be more financially stable, if not more lucrative, than trying to work and develop some degree of financial independence.
In the U.S. there are rules designed to allow a gradual transition from benefits to full self-sufficiency. But a few more hours of work, a few more dollars earned or saved per month can still mean losing Medicaid, Medicare, Social Security, or other benefits like Food Stamps or heating assistance – while the disabled person’s earnings aren’t nearly enough to make up for the loss. And even if benefits aren't fully lost, there is still the risk of overpayments, which can set up staggering, demoralizing debts that take years to pay off. It all complicates and even sometimes turns upside down the calculations most people make about earning a living, living by a work ethic, and pursuing a satisfying career.
Earning and saving too much money is a backwards problem that millions of disabled people don't just know firsthand, but have no choice but to obsess over.
7. Will I encounter someone who stares, makes ableist comments, or refuses to deal with me at all?
As many disabled people will readily admit, today’s world is mostly a friendlier place for people with disabilities than it used to be. Interpersonal ableism – like insensitive comments, rude staring, or outright discrimination – is much less common, or at least much different, than it was for disabled people 50 years ago.
But most disabled people also know that they can run into ableism any day, any time, in any situation. This can be anything from merely annoying to devastating and emotionally traumatizing interactions with people who, out of the blue, turn out to still have gut-level problems dealing with disabled people politely and appropriately.
Any fully accessible appointment, errand, or event can be ruined by an awkward or insulting encounter. Other people's ableism is never far from disabled people's minds.
One of the best ways to be helpful to people with disabilities is to do whatever is in your power to whittle away at this list of worries. And the first step is knowing about them. It helps just to remember that whatever level of success a disabled person might show on the surface, there’s a ton of extra planning and strategizing behind it.
To read the original article, click here: 7 Things Disabled People Have To Think About Every Day
LTC Webinar 11/19 - Register here!
On Tuesday, November 19 at 1pm ET, The Long Term Care Community Coalition is hosting a FREE webinar, Transforming Nursing Home Advocacy: Lessons from New Jersey’s Resident-Centered Approach. Join Ray DiFrancesco, Gail Smith, other New Jersey nursing home residents, and Elizabeth Speidel (NJ LTCO Director of Community Engagement) as they share how New Jersey elevates resident voices in long-term care advocacy. Learn how community engagement and grassroots organizing can shift power dynamics, transform relationships, and achieve impactful results.
Link here: Webinar Registration - Zoom
Note: You must register using the link above to access the program live. If you cannot attend, video and slides will be posted within a few days at nursinghome411.org/webinars.
Billing for Skilled Nursing Called into Question
Findings from an investigation into skilled nursing overbilling raise questions.
Overbilling and Killing? An Examination of the Skilled Nursing Industry is a new study on the extent to which some nursing homes manipulate the reimbursement system to maximize profits and the impact of these practices on both patient safety and the integrity of the use of the public funds which pay for most nursing home care in the United States.
These issues have been top concerns for LTCCC, especially in light of recent studies showing excessive hidden profits and tunneling of profits into related-parties in the nursing home industry. Five years ago, the federal Centers for Medicare & Medicaid Services (CMS) revised its payment system for Medicare services due to concerns about fraud. The new system, the Patient Driven Payment Model (PDPM), was supposed to reduce costs and improve efficiency. Unfortunately, as the authors of this new study found, the revised system is also prone to manipulation by predatory operators. This issue of the Brief is dedicated to some of their key findings.
OVERBILLING AND MASKING POOR CARE
Some nursing homes, referred to as “opportunistic systems,” systematically overcharge for care, particularly in rehabilitation services, to maximize profits. This overbilling contributes to rising healthcare costs while draining public funds meant for care. It has resulted in overbilling Medicare by an estimated $4.3 billion, while patient outcomes have worsened significantly.
Patients at these facilities are 67% more likely to develop pressure ulcers and nearly 10% more likely to die within 90 days of leaving the facility.
The data suggest that this has contributed to an additional 35,000 hospitalizations and 30,000 deaths since PDPM’s implementation in 2019.
These facilities underreport preventable conditions such as pressure ulcers, urinary tract infections, and traumatic falls, artificially inflating their CMS ratings.
These deceptive practices mislead residents and families who rely on these ratings to choose providers. In reality, these facilities have lower staffing, more health deficiencies, and twice as many substantiated complaints as their more ethical counterparts.
Early Voting has begun in New York State!
The election cycle is in full swing in New York. Get your voting information here.
If you haven't voted yet - consider voting early - today!
New York’s early voting period is October 26 through November 3rd this year. If you haven’t found time to request your absentee ballot and are worried about making it to the polls on Election Day, early voting might be a great option for you. Voting early ensures that nothing stands between you and the ability to make your voice heard.
To learn more about ballots, registration and other voting information, click one of the following links:
For Clinton County residents: Clinton County Board of Elections | Clinton County New York
For anyone, including Clinton County residents: Register to Vote: Absentee Ballot Request & Voter Registration Services
U.S. Vote Foundation joins thousands of organizations across the country to celebrate Vote Early Day 2024. Over 220 million Americans have the option to vote ahead of Election Day, by mail or in person. If you’re planning to vote in person, we encourage you to celebrate your right to vote by casting your ballot early.
October 15 Marks World White Cane Safety Day!
October 15 Marks World White Cane Safety Day
If you don’t know, white canes aid someone with a visual disability or blindness. People use the cane for independence in mobility and navigation. A white cane also makes people aware that the user has a visual impairment. White Cane Safety Day is a reminder that people who have a visual disability are equal to those who have sight. This includes having equal access to roads.
In 1968, President Lyndon B. Johnson proclaimed October 15th of each year as White Cane Safety Day. In like manner, each president since Johnson has recognized blind Americans on October 15th
To learn more about the history and significance of White Cane Day, click here!
World White Cane Day: History, Significance, Quotes, Celebrations, and Courtesy Rules - News18
Congratulations on your new job!
Congratulations, Jenna McPherson!
We are thrilled to announce that Jenna is moving into the Outreach Specialist position with New York at NCCI!
Jenna, your dedication, hard work, and passion have truly paid off. We can't wait to see all the amazing things you'll accomplish in this new role. Wishing you all the best on this exciting journey!
An Outreach Specialist with New York Connects primarily focuses on:
1. **Providing Information and Assistance**: Offering unbiased information and helping individuals navigate available resources and services.
2. **Community Outreach**: Engaging in public education campaigns and outreach activities to raise awareness about available services.
These roles are essential in ensuring that individuals receive the support they need to live independently and with dignity.
Jenna, your dedication, hard work, and passion have truly paid off. We can't wait to see all the amazing things you'll accomplish in this new role. Wishing you all the best on this exciting journey!