Learn About Upcoming, Proposed, and Final Federal Rules for Spring 2024

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Final Rules for April 2024

This April, the government finalized a lot of federal rules that matter to our community. Federal rules are made by the executive branch to make sure people and groups follow laws. 

Some of the rules finalized this month make it easier to get and keep Medicaid, SSI, and other benefits. Others make sure that the services and supports that we get are useful and will help us. These are both important ways to make sure that disabled people are able to use the programs that let us live in our communities. Some of these rules also say what the government, hospitals, or other people need to do to respect our rights and not discriminate against us. This helps make sure that people with disabilities’ rights are protected wherever we go.

Here is a look at some of the important rules that have been finalized this month.

Nondiscrimination in Health Programs & Activities (ACA Section 1557) 

The Affordable Care Act (ACA) was an important law that gave a lot of people health care. You can learn more about the ACA in our guide here. Section 1557 of the ACA says health programs and activities cannot discriminate against people.  This rule explains what the government means by “do not discriminate”. 

This rule does many important things to make sure that we can get health care without hospitals and doctors making it harder for us because of our disabilities, race, sex, gender or sexual orientation. It includes more health care providers who receive money from the government than previous rules. When providers get money from the government, the government can ask them to do more to protect people’s civil rights. So this means more health care providers have to do more to protect civil rights than before.. 

The rule also says that doctors and insurance companies have to let people know about accessibility and language services they give, and tell people that these do not cost money to use. The rule says that telehealth services need to be accessible to people with disabilities and people who don’t speak English. It also says that if providers and insurance use computer programs to help them make decisions, those computer programs can’t discriminate.

Medicaid Program: Ensuring Access to Medicaid Services” — referred to as the “Medicaid Access Rule” or “Access Rule”

One rule that really matters for our community is the Medicaid Access Rule. The Access Rule does a lot to make sure that Home and Community Based Services (HCBS) works well for us. It makes sure that the HCBS we’re getting is good, that it meets our needs, and that we have a way of complaining if it doesn’t. In other words, the new Access Rule gives all the rules for how states need to show that they are following the current Settings Rule. To learn more about the HCBS Settings Rule, see ASAN’s resource, This Rule Rules!: The HCBS Settings Rule and You

The Access Rule says that every state must meet higher standards for keeping track of incidents that cause harm to HCBS recipients or put HCBS recipients at risk of harm. If those incidents happen, there is now a grievance system for HCBS. Grievance systems create the chance to fix past harm and prevent it in the future. 

The Access Rule also creates a provision that Direct Support Professionals (DSPs) must get paid better. When DSPs are paid better, they can provide higher quality services to us. Sometimes, HCBS providers spend Medicaid funds in ways where too much of the money goes towards administrative costs or making money for the providers. That’s not right. The Access Rule says that, in six years, states must ensure at least 80% of Medicaid payments go toward DSPs and other workers who provide direct care to people with disabilities. This change will help both direct support workers and disabled people. 

Additionally, the Access Rule strengthens opportunities for Medicaid enrollees to share their experiences and feedback with those who make Medicaid policy decisions through the new Beneficiary Advisory Council (BAC). Click here for a Fact Sheet summarizing the Access Rule

Managed Care

Another rule finalized this month was the Medicaid and Children’s Health Insurance Program Managed Care Access, Finance, and Quality Rule.  Managed care is a way of paying for health care. Instead of paying health care providers directly for each patient they see and procedure they do, Medicaid pays an amount of money to companies called managed care organizations. Managed care organizations then give the money to health care providers. If the managed care organizations can save money on health care, they get to keep the extra money.  This can help save money on health care costs. To learn more about Medicaid and Managed care, you can read Part 2 of our toolkit, A Self-Advocate’s Guide to Managed Long-Term Supports and Services.

This rule says that patients who get Medicaid through managed care can’t wait long times to get appointments. It says that the government will check wait times by sending people undercover to check them.  Managed care organizations will also have to publish information about provider wait times and quality measures where patients can find this information. The patients can use this information to decide who to see.

Nursing Home Staffing

The Medicare and Medicaid Programs: Minimum Staffing Standards for Long-Term Care Facilities and Medicaid Institutional Payment Transparency Reporting Final Rule.  This rule applies to Long-Term Care facilities, such as nursing homes, that are overseen by Medicare or Medicaid.  The rule sets a minimum amount of staff allowed for these settings. It requires an available nurse to be present on-site 24/7 in case of a medical issue. The rule also requires each Long-Term Care Facility to provide the public with information on how much of its money it spends on staff wages and salaries.

Reproductive Privacy Under HIPAA

The Department of Health & Human Services (HHS) issued the HIPAA Privacy Rule Final Rule to Support Reproductive Health Care Privacy as a continued federal response to the Dobbs case that overturned the abortion protections offered by Roe v. Wade. The final rule strengthens privacy protections for people who seek, obtain, provide, or facilitate reproductive health care services. The rule prohibits regulated entities from disclosing protected health information (PHI) that could identify an individual in a way that could cause civil liability or be used in criminal, civil, or administrative investigations, or be used to impose criminal, civil, or administrative liability.

Notice of Benefit and Payment Parameters

The HHS Notice of Benefit and Payment Parameters for 2025 Final Rule was also issued this month by the Centers for Medicare & Medicaid Services (CMS). This rule makes several improvements to how Marketplace health insurance plans are administered. This means expansions of what Marketplace plans could cover, simplification of plan selection, easier enrollment, better consumer protections, and more. 

This rule expands coverage in three ways. First, adults with Marketplace plans living in a state that adds routine adult dental benefits as an essential health benefit (EHB), will have routine adult dental services covered by their insurance as soon as January 1st, 2027. 

Second, if your coverage for prescription drugs exceeds what is covered by a state’s EHB-benchmark plan, your prescription drugs are now considered an EHB. This means your prescription has the same nondiscrimination protections as EHBs, making it much harder for your state to deny your prescription. The rule also requires at least one patient representative with lived experience to be part of the committee that evaluates, analyzes, and recommends treatment protocols and procedures for a given drug or therapy.

Third, the rule requires State Marketplaces and State-based Marketplaces on the Federal platform to set new standards that ensure adequate medical services are available within a time and distance defined by the Marketplaces. This will result in people with marketplace plans having increased access to health care providers as soon as January 1st, 2026.

Some of the ways CMS is simplifying plan selection and making enrollment easier are by improving the EHB-Benchmark Plan update process, automatically re-enrolling people with catastrophic coverage into a new qualified health plan (QHP) the following year, and adding new special enrollment periods when people can sign up for a Marketplace plan. The better consumer protections include considering state-mandated benefits that are EHBs in the state’s EHB-Benchmark plan to have the same nondiscrimination protections as EHBs and requiring State Marketplaces to operate a centralized eligibility and enrollment platform.

Medicaid Eligibility and Enrollment

The Streamlining the Medicaid, Children’s Health Insurance Program, and Basic Health Program Application, Eligibility Determination, Enrollment, and Renewal Processes Final Rule is also known as the Medicaid Eligibility and Enrollment rule.  This rule makes it easier for people to apply for Medicaid and keep Medicaid if they already have it. It says states cannot require in-person interviews for people who are eligible for Medicaid because they are over 65 or are Blind or have a disability. The rule also makes sure people have a reasonable time to return materials that the state will use to determine eligibility. It also makes sure that states use information that other public programs collect to determine income.

The rule also makes it easier to keep Medicaid if you already have it because of age, Blindness, or a disability.  It says:

  • States can only make you reapply to Medicaid once per year,
  • States have to make sure renewal forms already have some of your information filled out
  • States have to give you multiple ways to renew Medicaid, including online, phone, mail and in-person, and
  • If a state wants to take away your Medicaid because they didn’t get your paperwork back, they have to give you 3 more months to get paperwork to them so they will change their decision.

Web Accessibility

The Department of Justice (DOJ) issued a final rule updating Title II regulations. The final rule has specific requirements about how to ensure that web content and mobile applications are accessible to people with disabilities. Title II of the Americans with Disabilities Act (ADA) applies to all state and local governments, so that is who this new rule applies to. The final rule makes the Web Content Accessibility Guidelines (WCAG) Version 2.1, Level AA  the technical standard for state and local governments’ web content and mobile apps and requires state and local governments’ web content and mobile apps to usually meet that standard with exceptions. 

The five exceptions include: 

  • Archived web content. 
  • Preexisting conventional electronic documents. 
  • Content posted by a third party where the third party is not posting due to contractual, licensing, or other arrangements with a public entity. 
  • Individualized documents that are password-protected.
  • Preexisting social media posts. 

States will have two or three years to comply with the rule depending on their population size.

EEOC Pregnant Workers Fairness Act

The Equal Employment Opportunity Commission (EEOC) issued a final rule to clarify the reasonable accommodation protections for qualified applicants or employees who have known limitations that were part of the Pregnant Workers Fairness Act (PWFA). The PWFA defines limitations as “physical or mental conditions related to, affected by, or arising out of pregnancy, childbirth, or related medical conditions” and prohibits covered employers from: 

  • Failing to make reasonable accommodations. 
  • Forcing an accommodation that is not reasonable and determined by the interactive process.
  • Denying a job or other employment opportunities.
  • Requiring an employee to take leave based on a need for a reasonable accommodation.
  • Punishing or retaliating against an employee or applicant for requesting or using a reasonable accommodation.

The PWFA applies to private employers and public sector employers (state and local governments) that have 15 or more employees. It also applies to Congress and Federal agencies, and to employment agencies and labor organizations. The PWFA does not replace federal, state, or local laws that are more protective of workers affected by pregnancy, childbirth, or related medical conditions. 

Title IX

The U.S. Department of Education issued a final rule relating to Title IX of the Education Amendments of 1972 (Title IX) to clarify sex discrimination protections in federally funded education. The final rule provides updated clarifications on the prohibition of discrimination against LGBTQI+ and pregnant individuals, and provides full protection against sex-based harassment. The final rule requires schools to take immediate steps to end, and prevent the reoccurance of, sex discrimination in their programs and activities. The rule requires schools to respond promptly and effectively to all complaints of sex discrimination while also providing supportive measures to complainants and respondents. The rule also provides protections against retaliation and prohibits schools from sharing personal information.

This Title IX rule does not provide clarification on transgender athletes’ participation in sports.  We are expecting a different rule to talk about Title IX and sports. We encourage the Department of Education to release that rule as soon as possible.

Rules about Social Security Insurance

The Social Security Administration (SSA) finalized three rules related to Social Security Insurance. Social Security Insurance (SSI) provides vital cash assistance to many different types of people, including disabled people. People who get SSI payments get a certain amount of money every month. SSI payments are already very low. If people on SSI get “In-Kind Support and Maintenance” (ISM), they get less money from SSI every month. 

The first two rules are about in-kind support. In-kind support is when someone gives you help for free that would otherwise cost money. The SSA subtracts the dollar amount of in-kind support someone receives, from their monthly payments of SSI. The list of things that count as in-kind support used to be too broad. The new rules limit what counts as in-kind support. This is a good change. One of the rules removes food from its calculations of in-kind support, like groceries or meals. The other rule relates to housing. It says that if you’re paying full-price rent (rent that matches the property’s “market value”), then the cost of the room is not considered in calculations of in-kind support. Both of these improvements would help make sure that people’s SSI benefits are not reduced unnecessarily. See here for the ISM Food Rule and here for the ISM Housing Rule

SSA also expanded its definition of “Public Assistance Households.” The term Public Assistance (PA) Household describes people who either have applied for or are receiving some kinds of government assistance, including SSI. The new rule is less restrictive, which helps disabled people. The new rule lowers the number of household members needed to qualify and it adds the Supplemental Nutrition Assistance Program (SNAP) to the list of qualifying types of government assistance. 

Expanding the definition of PA Households will mean more households could qualify as PA Households. This means more people could be able to get the advantages of living in a PA household. One advantage is that members of PA Households who give each other in-kind support do not have the dollar amount of that support deducted from their SSI payments. This change helps people avoid unnecessary reductions in their SSI payments. This change also cuts down on how much paperwork people have to do to keep their benefits. See here for the new final rule on Public Assistance Households.

Disability Adjudication Process

This rule is particularly relevant to people applying for disability benefits. In the rule, SSA redefines past relevant work (PRW). The new definition decreases the relevant work period from 15 to 5 years. SSA will also not consider past work that started and stopped in fewer than 30 days to be PRW. This will make it easier for some individuals to obtain disability benefits and will shorten the application process for everyone.

Hawkins Centers of Excellence

The Department of Education issued final priorities, requirements, and definitions this month for use in the Augustus F. Hawkins Centers of Excellence (Hawkins) Program. This program helps increase the number of and retain, well-prepared teachers from diverse backgrounds and increases the number of clinical experiences for teachers in training to prepare them for success. The purpose of this program is to close student achievement gaps. This action helps support the implementation of this program and will result in more teachers with disabilities in the workforce and improved outcomes for students with disabilities.

That’s Not All!

There are more federal rules that are still coming out.  This list is not complete. There are a lot of rules we expect to be out very soon that will also be very important for our community.  When these rules come out, we will also tell you more about them!

Here is a look at some of the rules we expect to come out soon: 

Section 504 rules

Section 504 of the Rehabilitation Act is another law that makes sure we can’t be discriminated against. This year, the government is making a lot of new rules to update how the federal government enforces Section 504.  These regulations have not been updated in fifty years and desperately need to be updated to reflect both technological progress and current policy needs. 

There are several rules for 504 because of how important it is. Many departments of the government have their own 504 rules. Each of these rules talks about how the government prevents discrimination against people with disabilities in a different department. 

Some of the rules that will be coming are:

HHS Section 504

This rule will make sure people with disabilities aren’t discriminated against when they get health care that gets federal money.  Most health care gets some sort of federal money.  That means these rules will protect people from discrimination in most health care settings.  .

DoE/DoJ 504

We are currently waiting for a notice of proposed rulemaking from the Department of Education and Department of Justice that would update the regulations that protect people with disabilities from discrimination in educational settings. 

ASAN previously provided recommendations to the Department of Education with our coalition partners focused on guaranteeing students with disabilities’ right to free appropriate public education, codifying protections for students with disabilities in higher education, improving enforcement of Section 504, and addressing deep racial inequities. 

HUD 504

This rule will make sure people with disabilities aren’t discriminated against in housing.  This rule is further behind than the other rules, so we don’t know a lot about what it says yet.  When there is a rule we will tell you about it and how to give comments.

Title IX Athletics rule

The Department of Education proposed a Title IX Athletics rule that would prohibit categorical bans on transgender athletes participating in parts. Unfortunately, the proposed rule would still allow for some schools and school districts to place restrictions on individual transgender athlete participation in some circumstances. ASAN and many other organizations have argued for stronger protections from discrimination for all students who want to participate in athletics. 

Affirmatively Furthering Fair Housing

The Fair Housing Act says that landlords can’t discriminate against people who are trying to get a place to live.  Affirmatively Furthering Fair Housing is a rule that helps the government enforce that law.  It says that people who get government money to give people housing have to make sure they’re being fair about it and not discriminating. They have to have a plan to reduce inequality in housing for people who have been discriminated against. They have to share these plans with the government.

Proposed Rules Spring 2024

There are more rules that the federal government is releasing all the time! Before a final rule goes out, the government lets everyone see the proposed rule, and asks for members of the public to tell the government what they think about it. The government reads all these comments and has to respond to them in the final rules it releases. Here are some of the proposed rules that are out right now. ASAN is commenting on these rules, and you can comment too!

Banned Devices; Proposal To Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior

The Food and Drug Administration (FDA) has proposed a rule banning the use of electrical stimulation devices for self-injurious or aggressive behaviors. These devices are used to give people painful shocks to make them change their behavior. These devices hurt disabled people and the UN has called them torture. The Judge Rotenberg Center (JRC) in Massachusetts is the only institution in the country that makes and uses these devices. This rule would ban these devices, meaning the JRC could not make or use them anymore. To learn more about our #StopTheShock campaign and how you can submit comments, check out our Action Alert!

Wheelchair Accessibility on Airplanes

The Department of Transportation (DOT) has proposed a rule that would create new penalties and remedies for mishandling wheelchairs. The proposed rule would also require prompt return of delayed wheelchairs and improved standards for on-board wheelchairs used by planes. 

Reducing Barriers to HUD-Assisted Housing

The Department of Housing and Urban Development issued a notice of proposed rulemaking this month that would change how public housing programs are allowed to consider criminal records of people applying for housing assistance. A criminal record can make it a lot harder to get and keep a home, and can also make it harder to get some kinds of government assistance. The goal of these regulations is to limit the number of people who can’t get homes for no reason besides a criminal record.

The proposed rule would require Public Housing Authorities and assisted housing owners to consider additional information that would provide context for an applicant’s history. Two of the things that Public Housing Authorities and assisted housing owners will be asked to consider are how recent that criminal legal involvement was, and how relevant it is to whether someone could be safely housed. 

This rule is important to us because autistic people and people with intellectual and developmental disabilities are sent to jail and prison more often than non-disabled people. Rule revisions like these help reduce homelessness. We will be tracking this NPRM and its eventual final rule alongside our coalition partners at the Consortium for Constituents with Disabilities.

Disabled people have a right to live safely in our own communities. Our schools, workplaces, support workers, healthcare facilities, and homes should all support that goal. That’s what these rules are working towards. Keep an eye out for our continued coverage of these many new rules!