Category Archives: Action Alert

Action Alert, News

Care, Not Fraud

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CARE, NOT FRAUD:
DEFENDING MEDICAID’S HOME AND COMMUNITY BASED SERVICES

Reducing Medicaid benefits creates costlier problems. Colorful doodles with text, See outline on webpage for content as text.
Reducing Benefits Creates Costlier Problems!

UNNECESSARY INSTITUTIONALIZATION  COST TAXPAYERS MORE AND WORSEN OUTCOMES

People Are Forced From Their Homes and Community Due to Insufficient Funding of Community Supports
        • The unavailability of paid staff , lack of family, or inability of family to be and/ or remain caregivers due to poor finances, health, age, stress, lack of skills, responsibilities or burnout, leaves individuals with disabilities with unmet needs and families with no choices.
History of Institutional Settings
        • Staff complacency, high turnover, reduced health and wellness outcomes, isolation, increased costs, and fraud and waste.
        • Physical, sexual, and psychological abuse are present at many residential facilities, including physical restraint and seclusion as well as the overuse and misuse of psychotropic medicine.
        • Overcrowding, understaffed,
Institutions Are Not A Solution.
        • Institutional care cost two to five times as much as HCBS
              • Full 24/7 hours billed
              • Billed at much higher rates
              • Adminstrative cost
              • Overhead cost
        • Institutions lead to worse outcomes
              • Decreased quality of life
              • Isolation and loneliness
              • Loss of autonomy and independence
              • Poor health outcomes
              • Greater hospitalizations
              • Loss of individual legal protections as facilities gain immunity from prosecution
              • Little to no transparency and accountability
        • Private equity firms are rapidly aquiring care facilities, both large and small, for profit purposes
              • Equity firms cut costs to maximize profits, reducing quality
              • Multi-state nature of entities makes oversight more and more challenging
              • Lobby for less oversight, regulations and immunity from legal liability for substandard care, debt, or injuries.
              • Nursing and group home abuse, neglect, and deaths.  “Profit, Pain, and Private Equity”
        • Institutional placements do not address fraud, or reduce improper payments, or improper payments that do end up being actual fraud, but instead make it more difficult to detect.
        • Unnecessary institutionalization violates the Americans with Disabilities Act ‘Integration Mandate’ by failing to provide the community-based services adults with disabilities need to remain in their communities.

SUPPORT PLANS DETERMINE NEEDS

Person-centered Planning Process and Functional Assessment
        • Functional Needs Assessments are completed by trained professionals to determine needs and if the individuals meet the “Level of Care” criteria. Assessments focus on each individual, including their goals for community living.
        • Individualized Support Plans are written based on assessments that specify the services, hours and supports to be provided.  Plans are reviewed periodically.
        • Care provided by paid staff and paid/unpaid family is considered medically necessary. It may include everything from providing personal, hygeine and health care, community integration, transportion, skill development, mobility assistance, to behavior, daily living, communication, assistive technoloy, and other supports.

MEDICAID AGENCIES PROVIDE OVERSIGHT AND AUTHORIZATION OF SERVICES

Strong Safeguards Already Exist to Prevent Fraud
        • Medicaid reviews, monitors and authorizes limited services  and hours written into individual plans.
        • Paid family care givers are subject to verified strict safeguards to prevent fraud and abuse: verifications, documentation, monitoring, data analytics, background checks, evaluations, care plans, and services authorization. Additionally, Financial Management Services (FMS) companies are used as fiscal intermediaries to ensure payments to providers are in accordance with the service authorization.
        • Self-direction programs allow individuals to hire staff they choose, including family. They are highly regulated to protect against waste and fraud, reduce costs and increase positive outcomes.
        • A well-administered self-direction program minimizes Medicaid fraud, waste, and abuse. By giving fiscal and compliance responsibility to participants, it promotes transparency, reduces administrative overhead, and encourages sensible spending. Highly compliant, accountable and transparent self-direction programs can deliver significant benefits to participants, their families, and budget-conscious Medicaid directors.
Research indicates that self-direction for Home and Community-Based ServiceHs (CBS) is not more prone to fraud, waste, and abuse than traditional agency-based care.

WORKFORCE REALITIES

National Staffing Shortages: Low Wages & Poor Benefits
        • Care is essential, not optional.
        • When staff is not available to hire, family members have no choice but to be caregivers, sometimes 24/7.
        • Family members forced to leave jobs, or reduce work hours, face significant losses of household income, healthcare, benefits and savings, and increased expenses, paperwork, meetings and notes.  It is difficult for couples to go out or travel together.
        • Paid family caregivers remain subject to the same requirements as any hired staff, of authorization, oversight and limited amount of paid hours written in the plan.
        • When family caregivers don’t get paid for covering the approved hours, individuals are considered not utilizing the service hours and risk having their total approved hours reduced for underutilization. The decrease in approved hours is not because of reduced needs, but the inability to hire staff.
        • Family caregivers provide an estimated $1 trillion in unpaid care annually (AARP Public Policy Institute), often at the expense of their own financial security and personal well-being.
Prohibiting Family Members from Being Paid Caregivers
        • If family members are not able to get paid as caregivers to offset  lost income from reductions or loss of employment, it can make it financially unfeasiable to remain caregivers.
        • They may be unable to provide the hours of care needed and maintain employment to pay basic bills.
        • Increases the family’s need for government programs such as  food assistance, housing, heating, healthcare and other benefits, shifting expenses not saving money.
        • When individuals can’t get the care they need, it puts them at risk of forced institutionalization.
FAILURE TO ADDRESS THE NATIONAL STAFFING SHORTAGE SHIFTS THE FINANCIAL BURDEN FROM SERVICES TO HOUSEHOLDS

HOME AND COMMUNITY-BASED SERVICES (HCBS) REMAIN OPTIONAL
WITH LONG WAITING LISTS, LIMITED FUNDING & LOW STAFFING RATES

MEANWHILE, INSTITUTIONAL CARE REMAINS A GUARANTEED ENTITLEMENT
MEDICAID POLICIES CONTINUE TO HAVE AN “INSTITUTIONAL BIAS”
THE INDUSTRY OPERATES FOR A PROFIT

 

THIS POST WILL CONTINUE BE UPDATED WITH RESOURCES AND INFORMATION
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Action Alert, News

How to Improve Medicaid

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How to Improve Medicaid

Image emphasizes Medicaid people on Medicaid already cannot get enough support and suggestions to improve it.
Ways to improve Medicaid, end waiting lists and staff shortages! Increase civil rights!
Full description

Doodles & text about improving medicaid. Title: How to improve medicaid (for those who “truly need it”).

Image: Man in wheelchair smacking his head. T-shirt reads, “Our homes not nursing homes”. He is saying “we already cannot get enough support to eat, bathe, dress, toilet, transportation, work, shop or be safe.”  Image: Shocked looking man, “You mean disabled folks don’t just get what they need?” A large question mark over his head.

Highlighted groups of texts. Increase funding! End waiting lists! Millions unserved & underserved! This group includes a doodle of a money bag and green arrow pointing up. Increase rates! End staffing shortage crisis! Improve quality! Side image of dollar signs getting larger with an arrow going up.  End institutional bias! Home & community based services (HCBS) must be mandatory! (not optional). Increase rights, protections, opportunities & accessibility!

At the bottom of the cartoon is a row of protest signs and hands. Signs read: Equal access! Disability rights are civil rights! Stop segregation! Implement Olmstead! End disability poverty! Community supports now! Cuts will kill! Real homes not group homes! The words “Talk with the people!” Appears over a cat. Colleen Tomko copyright 2025

When states get fewer dollars they have limited choices.

  1. Reduce Benefits
  2. Reduce Enrollees
  3. Take funds from other budget items
  4. Raise taxes

Medicaid is already underfunded and requires increased funding to meet the needs of people with disabilities and seniors. General cuts (Even when claiming to address specific issues) have historically been shown to reduce critical community services for people with disabilities, because they are optional and the easiest to reduce in state budgets.

For example: From 2010 to 2012, all states reduced HCBS program spending in response to Federal Medicaid cuts. All states reduced spending on Home and Community-Based Services (HCBS), either by spending less per person or by reducing the number of beneficiaries receiving HCBS. In many states, waiting lists for HCBS grew substantially, and still exist today!

When states reduce Medicaid’s Home and Community Based Services, people lose essential supports to remain in thier own homes and community. This is in direct conflict with the Supreme Court’s 1999 Olmstead decision, which established that unjustified segregation of people with disabilities in institutions is a form of discrimination under the Americans with Disabilities Act (ADA), creating civil liberties issue. Private insurance companies do not provide for community services or home care. Without Medicaid, everyone becomes susceptable to loss of their civil rights and being forced into institutional care when they have greater needs.

CONTACT YOUR LEGISLATORS!
(866) 473-5915

Let them know what Medicaid means to you, your families, friends and neighbors! Let them know how they can improve Medicaid!

Action Alert, News, Uncategorized

Who Are Medicaid Cuts Really For?

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Who are Medicaid Cuts Really For?

The House and Senate passed a concurrent budget resolution for Fiscal Year 2025 on April 10th. This resolution serves as a blueprint for the budget process and sets targets for congressional committees.  It calls for an $880 billion dollar reduction to the Energy and Commerce, which oversees Medicaid and Medicare.

The Energy and Commerce Committee advanced its portion of the reconciliation billon May14th.  It proposes reducing spending in the Medicaid program by $715 billion 2025-2034. It creates greater bureaucracy, red tape and ultimatily less funding for states.

The proposals advanced to the House and Budget Committee as part of a large bill that was voted don on Friday May 16th. There is another attempt to pass the bill,  if it passes it goes on to the rules committee. If the House passes a bill, it then goes to the Senate.

Who are Medicaid Cuts Really For? Man in suit answers woman in a wheelchaior. He sayd, we need cuts to be able to give more to those who "truly need" it. The women asks, so you're increasing funding to HCBS, Home and Community Based Services, so people with disabilities can live successfully in their communities? He answers, not exactly. She asks, Will there be more funding to end waiting lists and increase rates to address the stafffing shortage crisis? He answers no. Behind the man is an image of a paper scroll that says Bill, and then Big Beautiful bill with an asterick, And then and asterick and the words-Not for everyone. In front of the man are money bags with a tag saying To" the rich. Behind the women in the wheelchair is a mouse, about him the words, Not even a crumb?! Colleen Tomko Copyright 2025
Who are Medicaid Cuts Really For?

Tracking the Medicaid Provisions in the 2025 Reconciliation Bill

View a summary of the Medicaid provisions included in the legislation approved by the Energy and Commerce Committee compared to current law at KFF .

Federal Medicaid Cuts Would Force States To Eliminate Services for Disabled Adults, Older Adults, and Children

The reconciliation bill that passed out of committee in the House proposes cutting Medicaid and therefore gutting essential services upon which disabled and older people rely.  Read the full article at American Progress.

Advocacy Groups: Medicaid Cuts Would Adversely Impact Home-Community-Based Services

The National Alliance for Care at Home released a statement opposing the Medicaid reductions. “Although we recognize that leadership in the House and Senate have expressed support for preserving services to these populations, we do not believe that it is possible to reduce Federal Medicaid expenditures by hundreds of billions of dollars over a ten-year period without negatively impacting eligibility and access to care.” Read the full article at Hospice News.

Action Alert, News

No Cuts to Medicaid!

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No Cuts to Medicaid!

Medicaid is the primary payer for long-term services and supports (LTSS) in the United States. It pays for more than two-thirds of the LTSS delivered in home and community-based settings (HCBS). If large cuts happen, it could mean pulling back on HCBS services because they are not government mandated.

A colorful cartoon graphic with a header in bold letters reading Medicaid already under funded! Below are four panels the first panel says now. It has a bold word "now" and the number 710,000 on waitlist circled. There’s a long weaving line of people coming up to a sign that says stop no services wait years. And a path to hooray, with a person in a wheelchair, it says finally eligible and then an arrow with a sad face saying sorry you can’t get staff with the rate Medicaid pays . Some doodles of money and thumbs down. The second panel says fraud and has colorful text saying detected by, below that is says each state and fed and arrows drawn to different agencies Medicaid fraud units, program, error, rate, monitoring, healthcare, fraud, and abuse, MCO‘s, managed care, organizations, DOJ, Attorney General and a little clip art of a detective . Then there is the word improper payments below. It says make up 5.1% of all payments and $31 billion then under that it says 79% are errors and missing documentation. There’s an arrow that points to a pie chart. It says 5.1% and the pie chart shows small slice of improper payments and the larger dark blue area says 94.9% are proper payments. The third panel has a small graphic of the dome of the capital over bold letters of word Congress and annually 88 billion cut. There’s a pair of scissors. There’s arrows pointing from cuts up to the frame that says fraud. Under that it says minimum reduction to energy and commerce committee budget and below that is a pie chart showing 38% Medicaid $618 billion and it says the year 2024 and the other part of the pie chart shows 60% Medicare $838 billion and the year 2024. There’s also some highlighted text with a little warning symbol that says if Medicare isn’t touched, the math doesn’t work without deep cuts to medicaid. Below that is a Post-it note on it the words "cuts are almost 3 times greater than government data on improper payments" a yellow arrow ppoint back up to improper payments in panel 2. The fourth panel is the word outcomes bold, and a blue, sad, crying, smiley face. Below that is a clipboard with a image of the Grim Reaper, and a list titled increased, and then checkmarks next to waitlist, abuse, neglect, seclusion, poor health, institutionalize millions of people, death. To the right of that, it says home and community based services HCBS provides waivers as alternatives to more costly pay or funded institutions! Under that says first to be cut with a red line ubder it. Below that is a little protest sign that says disability rights are civil rights. At the bottom there’s a stamped "bad news" in red. Next to that it reads federal cuts of $880 billion over 10 years ($88 billion a year) would represent 29% of state finance Medicaid spending per resident.
Medicaid is already underfunded!

Waitlists of Over 710,000 Already Exist

  • Many individuals wait years without any services

Waiting lists provide an indication of people who may need services they are not receiving, but they are an incomplete measure of unmet needs because they don’t include people with unmet needs in states that do not cover the applicable services.

  • Those who become eligible still face difficulty getting services due to staff shortages

All 50 states have reported shortages for any type of Home and Community Based Services (HCBS) worker.

See Also:
“A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2024″

“Number of People Waiting for Medicaid Home Care (HCBS), by Target Population and Whether States Screen for Eligibility”

HCBS Workforce

Fraud as Measured by Government Sources

  • Government Information and Data
      • Total “Improper payments” are $31 billion, which is 5.1% of all Medicaid payments
      • 79% of improper payments are errors and missing documentation
      • Outright fraud is estimated to be $6.5 billion (A fraction of the $88 billion of proposed cuts)
  • Fraud is Detected by Multiple Federal and State Oversight Bodies
      •  Medicaid Fraud Control Units are required in each state
      •  State auditors
      •  MCO’s Managed Care Organizations
      • CMS Centers for MEdicare and Medicaid Services
          • Program Error Rate Monitoring
      •  HHS Office of Inspector General (OIG)
          • HHS-OIG Healthcare Fraud and Abuse Control (HCFAC)
          • Medicaid Fraud Control Units (MFCU)
      • U.S. Department of Justice (DOJ)
      • Government Accountability Office (GAO)
      •  Attorney General

See Also:
“5 Key Facts About Medicaid Program Integrity – Fraud, Waste, Abuse and Improper Payments”

Budget passed by Congress effectively cuts billions from Medicaid

  • $880 Billion in cuts from the committee overseeing Medicaid
      • $880 billion over 10 years, or $88 billion cut annually from The Energy and Commerce Committee
          • Government data estimates “improper payments” at $31 billion (of which $6.5 billion may be fraud). Cutting $88 billion a year will cut services and benefits for those in need
      • Medicaid makes up 38% or  $618 billion off the committee’s budget
      • Medicare makes up 60%  or $838 billion of the committee’s
      • If Medicare isn’t touched, the math doesn’t work without deep cuts to Medicaid
      • Congressional Budget Office says, without cutting Medicaid, that level of cuts is mathematically impossible

See Also:
Read the budget text: Concurrent resolution on the budget for fiscal year 2025

Mandatory Spending Under the Jurisdiction of the House Committee on Energy and Commerce

GOP Budget Would Force the Largest Medicaid Cuts in American History

Outcomes would greatly harm people

  • Any action that reduces Medicaid will harm people, especially those with disabilities
      • Home and Community Based Services (HCBS) a would be the first to be cut
      • States are not mandated to fund HCBS
      • HCBS provides alternatives to forced institutional care
      • Waitlists would grow
      • Abuse and Neglect would increase with greater staff shortages and less funding for basic services
      • Increased seclusion and isolation
      • Forced institutionalization, as that remains mandatory funding
      • Increased in deaths
  • Cuts, Caps, Blockgrants  – All are arbitrary!
      • “If states do not offset federal Medicaid cuts by picking up the new costs, they would have to reduce Medicaid spending by covering fewer people, offering fewer benefits, or paying providers less” a new KFF analysis found.

Options for enacting cuts to Medicaid include:

        • Block grants or per capita caps — states would receive a fixed lump sum for Medicaid per enrollee, regardless of costs or inflation. States would have to pick up the difference, resulting in cuts to services and/or programs. Per-capita grants would limit the state to a set amount of money per Medicaid enrollee. Both strategies shift costs to states.
        • Reducing the federal match (Federal Medical Assistance Percentage or FMAP). All states currently receive a minimum of 50% in federal matching funds. Many states receive 90% in FMAP under Medicaid expansion, allowing them to bring more programs and services to older adults and provide coverage for unpaid family caregivers. Lifting the minimum 50% cap shifts more costs to states, forcing an overall cut in Medicaid spending. Ending the enhanced 90% FMAP for Medicaid Expansion, would automatically end expansion in several states and force other states to scale back Medicaid programs and services that older adults rely on.
        • Restricting allowable provider and insurer taxes, which every state uses to help fund all of their Medicaid programs, would reduce state budgets and force Medicaid cuts.
        • Cutting provider payment rates would result in fewer providers accepting Medicaid dorsening direct care workforce shortages for both people with disabilities. and seniors. Reducing access to care for seniors and potentially resulting in some nursing home closures.
        • Cutting medicaid funding won’t help people with disabilities. Reducing or eliminating federal funding for the Medicaid expansion population would not free up money for people with IDD or others disabilities. It just means less funding overall for the entire program.
  • 29% decrease in state-financed Medicaid spending per resident, with loss of matching dollars. 

      • Potential Federal Medicaid Cuts Represent 29% of State Medicaid Spending Per Resident, 6% of State Taxes Per Resident, and 19% of Education Spending Per Pupil

See Also:
Putting $880 Billion in Potential Federal Medicaid Cuts in Context of State Budgets and Coverage

Medicaid cuts, block grants and per capita caps would decrease federal spending, creating a choice between increased state spending and enrollee coverage.

Medicaid allows people to stay healthy, employed, and in their homes and communities. It is part of the core fabric of the U.S. health care system.  Cuts will have a ripple effect and impact hospitals, schools, nursing homes, families, employment, and more.  Medicaid is part of a foundation that supports people, it should be one of the very last things to be considered for reducing spending. People with unmet needs will increase costs for everyone.

See also:
What are the implications of Medicaid per capita caps?

Take Action! National Organizations Oppose Cuts to Medicaid

Action Alert, News

Disability Inclusive Curriculum

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Disability Inclusive Curriculum

Disability Equality in Education

Disability Inclusive CurriculumThe Disability Equality in Education (DEE) organization is a cross-disability led non-profit organization that initiated efforts to implement a Disability Inclusive Curriculum in schools. Pennsylvania is the first state to introduce the curriculum, which DEE hopes will eventually take place in all schools nationwide.

The ‘Disability Inclusive Curriculum’ will help K-12 students understand that disabilities are natural by embedding representation and lessons  about people with disabilities throughout the general education curriculum, activites and environments.  It includes teaching students about the political economic, and social contributions by people with disabilities.

Nothing About Us Without Us

DEE brings a unique perspective and expertise on disability in to the educational setting because of contributions by their network of disabled people and advocates from around the world. “Nothing About Us Without Us” is the heart of who they are and what they do.

A comprehensive ‘Disability Inclusive Curriculum Lesson Plan Library‘ was created by DEE and is available on their website as a resource for teachers to explore disability in the classroom. The focus is to normalize the idea of disability with all students.

In Pennsylvania

To learn more about the pilot program in Pennsylvania visit Pennsylvania’s Disability Inclusive Curriculum Pilot Program. Schools can apply for up to $30,000 in grant funding available through the Pa Department of Education to implement disability inclusive curriculum. Funding will be granted to successful applicants for a three-year period from the date of the award through June 30, 2026. A maximum of $10,000 per year is available to each school entity or nonpublic school entity.  Grant applications are due by May 15th, 2023. There is also a webinar overview of the grants and Q & A’s at https://www.pattan.net/Supports/Inclusive-Practices 

Support DEE and the Disability Inclusive Curriculum

Artsy colorful paper cut outs of 5 students of diverstiy, two using wheelchairs. Color pencils pointing at the group.
  • Donate with PayPal
  •  
  • Send checks: “DEE” 3607 Windsor Drive, Bensalem, PA 19020
  • Help DEE get connected with grants and donors for funding
  • Network with DEE and talk to leaders and advocates in your state
  • Contact DEE info@disabilityequalityeducation.org
  • Visit the DEE website
  • Join the DEE Education Forum on Facebook
  • Share this initiative with others to help and support DEE and the implemention of Disability Inclusive Curriculum.

Your support can make teaching a ‘Disability Inclusive Curriculum’ to all students in all schools across the nation possible!

Additional links:

Action Alert

Better Care Better Jobs Act (BCBJA)

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Better Care Better Jobs Act (BCBJA)

In March of 2021, President Biden proposed a major $400 billion investment in Home and Community-Based Services (HCBS) as part of the American Jobs Plan.

On June 24, 2021, The Better Care Better Jobs Act was introduced to operationalize and expand the proposal in the Senate as  S.2210  and in the House as H.R.4131. The bills would enhance Medicaid funding for HCBS and encourage innovative models that benefit care recipients and direct care workers.

Home care is the most cost-effective, fiscally responsible, and desired setting of care. Americans prefer to receive services and supports at home, but benefits and eligibility vary across states leaving almost 820,000 Americans remaining on waitlists for years.

There is currently a national shortage of Direct Support Professionals to provide support and care to people with disabilities and seniors. Over a 50% turnover rate, low wages, and sustained vacancies, leaves clients with none or inadequate support. 

The Better Care Better Jobs Act (S. 2210/H.R. 4131)  would make key improvements to the Medicaid program addressing both patient and caregiver challenges. 


• Permanently increase the Federal Medical Assistance Percentage (FMAP) by 10% for HCBS.
• Expand HCBS to require personal care services, family caregiver supports, and respite care.
• Address and annually update HCBS payment rates with an opportunity for public input.
• Update and develop training opportunities for the workforce.
• Require a maintenance of effort mandating that new funds supplement and not supplant current outlays.
• Make permanent spousal impoverishment protections for recipients of HCBS.
• Make permanent the Medicaid Money Follows the Person program.

TAKE ACTION NOW!

Act Now: Urge your Members of Congress to meet the needs of people with disabilities, their families, and the direct care workforce!

Please support the $400 billion Better Care Better Jobs Act, which will expand home- and community-based services (HCBS) that helps people with disabilities and seniors live with dignity in their homes and communities. It includes services such as help with daily activities, transportation, support while on the job, care coordination, and more.  It addresses the direct care workforce crisis. These services enable people to maintain their independence
and stay active in their communities. 

ADDITIONAL RESOURCES:

Action Alert

July is Disability Pride Month!

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July is the “Disability Pride Month” in the US. 2021 is the 31st Anniversary of the ADA.

Disability Pride

Disability Pride Toolkit and Resource Guide

The National Council on Independent Living.

What is Disability Pride?

Disability Pride is the idea that people with disabilities should be proud of their disabled identity. People with disabilities are the largest and most diverse minority within the population, representing all abilities, ages, races, ethnicities, religions and socio-economic backgrounds.