Category Archives: News

How to Improve Medicaid

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!

Who Are Medicaid Cuts Really For?

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.

No Cuts to Medicaid!

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

Disability Inclusive Curriculum

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:

New Discipline Guidance Focuses on Discrimination Against Students With Disabilities

New U.S. Department of Education discipline guidance clarifies federal protections against discrimination toward students with disabilities.

According to the new U.S. Department of Education guidance, schools must determine if a student’s behavior is related to their disability before disciplining them. U.S. Secretary of Education Miguel Cardona stated that the new guidance is the “most comprehensive” the department has ever released on the topic.

Four New Resources

Key takeaways:

Schools are required to provide behavioral supports and services to students with disabilities and must determine if a student’s behavior is related to their disability before expelling or suspending them for that behavior.

Section 504 prohibits schools from not making reasonable modifications for students with disabilities such as adapting school policies to support student needs; unnecessarily treating a student differently because of their disability; or using policies that have an “unjustified discriminatory effect” on students with disabilities.

A student’s IEP, or individualized education program, must include the use of “positive behavioral interventions and supports” to address disruptive behavior.  Behavioral interventions can include “special education and related services, supplementary aids and services, and program modifications or supports for school personnel.”

Behavioral interventions can include “special education and related services, supplementary aids and services, and program modifications or supports for school personnel.”  Physical restraints—when adults use their own physical force to restrain a student—could constitute discrimination. However, the use of “physical escort,” in which an adult temporarily touches or holds a student’s hand, wrist, arm, shoulder, or back “for the purpose of inducing a student who is acting out to walk to a safe location,” is not considered a restraint.

Informal removal, although not defined in IDEA and its implementing regulations, means action taken by school personnel in response to a child’s behavior that excludes the child for part or all of the school day, or even an indefinite period of time. These exclusions are considered informal because the school removes the child with a disability from class or school without invoking IDEA’s disciplinary procedures. Informal removals are subject to IDEA’s requirements to the same extent as disciplinary removals by school personnel using the school’s disciplinary procedures. Informal removals include administratively shortened school days when a child’s school day is reduced by school personnel, outside of the IEP Team and placement process, in response to the child’s behavior.

“Actions that result in denials of access to, and significant changes in, a child’s educational program could all be considered as part of the 10 days of suspension and also could constitute an improper change in placement. These actions could include when a school administrator unilaterally informs a parent that their child with a disability may only remain in school for shortened school days because of behavioral issues or when a child with a disability is not allowed by the teacher to attend an elective course because of behavioral concerns.”

 

First-Ever Bill of Rights for Passengers with Disabilities

The Bill of Rights provides a convenient, easy-to-use summary of existing law governing the rights of air travelers with disabilities

The Airline Passengers with Disabilities Bill of Rights, an easy-to-use summary of the fundamental rights of air travelers with disabilities under the Air Carrier Access Act, will empower air travelers with disabilities to understand and assert their rights and help ensure that the U.S. and foreign air carriers and their contractors uphold those rights. It was developed using feedback from the Air Carrier Access Act Advisory Committee, which includes representatives of passengers with disabilities, national disability organizations, air carriers, airport operators, contractor service providers, aircraft manufacturers, wheelchair manufacturers, and a national veterans organization representing disabled veterans. The Bill of Rights provides a convenient, easy-to-use summary of existing laws governing the rights of air travelers with disabilities.

The Bill of Rights does not expand airlines’ legal obligation or establish new requirements under the law, it DOES empower and educate passengers with disabilities of their rights and holds airlines more accountable for their actions.

The Bill of Rights consists of:

      1. The Right to Be Treated with Dignity and Respect.
      2. The Right to Receive Information About Services and Aircraft Capabilities and Limitations.
      3.  The Right to Receive Information in an Accessible Format.
      4. The Right to Accessible Airport Facilities.
      5. The Right to Assistance at Airports.
      6. The Right to Assistance on the Aircraft.
      7. The Right to Travel with an Assistive Device or Service Animal.
      8. The Right to Receive Seating Accommodations.
      9. The Right to Accessible Aircraft Features.
      10. The Right to Resolution of a Disability-Related Issue.

See More:
DOT Announces First-Ever Bill of Rights for Passengers with
Disabilities, Calls on Airlines to Seat Families Together Free of Charge

My Disability Roadmap – Watch Now!

My Disability Road Map

Streaming WORLDWIDE in The New York Times with captions and audio descriptions available. No subscription is needed to watch!

In the short documentary, Samuel seeks out guidance from America’s most rebellious disability activists. He wants to learn how they built full adult lives — as a road map for himself and others. “No one tells you how to be an adult, let alone an adult with a disability,” he says. “But there are badass people with disabilities who figured it out. Maybe they could be my mentors.”

I’m a College Student
with a Disability. Stop Treating
Me Like a Child.

The path into adulthood is a precarious one for those
with a disability. So Samuel Habib, 21, seeks out
guidance from America’s most rebellious disability activists.

Original source New York Times https://www.nytimes.com/2022/05/17/opinion/my-disability-roadmap-adulthood.html

Direct Support Professionals and the COVID-19 Vaccine


This 11-minute video is about vaccine safety and the reasons why it is important for direct support professionals to get vaccinated.
The video includes:

• The reasons why people with intellectual developmental disabilities are more vulnerable medically and have increased chances of getting a serious illness if they get COVID-19
• How the vaccine was developed quickly, compared to other vaccines
• How the vaccine works in the body, including what to expect when you get vaccinated
• How the virus can be passed to vulnerable people
• Reasons to get vaccinated even if you have already had COVID-19 • Long COVID-19, and how it affects the body
• How COVID-19 can affect pregnancy Produced by the Institute on Community Integration at the University of Minnesota.

New Documentary – This is Not About Me

This is Not About Me

Autistic and non-speaking. Stuck in an educational system that has given up on you. Restrained or rewarded with candy. This is Jordyn Zimmerman’s story and it is shared by so many other students. Watch the story of one autistic woman that fought hard to be recognized and trusted. Share the trailer to bring awareness and change the lives of countless others fighting that same system today.

The film is now available for rental for $9.99 All proceeds from the film will go to the Autistic Self-Advocacy Network (ASAN), CommunicationFIRST, and Thinking Person’s Guide to Autism to support them in their missions. 57 minutes. 30-day rental period.

Watch this powerful movie: This Is Not About Me.
https://thisisnotaboutme.film/ 

#ThisIsNotAboutMe
#endseclusion