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Public Policy Update - June, 2022

Public policy update


Budget and Appropriations

The House of Representatives and Senate continue to work on appropriations for Fiscal Year (FY) 2023. Appropriations is the yearly act of setting aside money for specific federal programs. These programs are critical to ensuring people with disabilities receive a quality education, can be employed, and receive services and support in the community. Funding for most programs that impact people with disabilities is included in the Labor, Health, Human Services, Education and Related Agencies (LHHS) bill. Advocates are working with Congress to increase funding in some of the programs, including Leadership Education in Neurodevelopmental and Related Disabilities (LENDs) and University Centers for Excellence in Developmental Disabilities (UCEDDs).

Plain Language:
Congress is working to fund federal government programs for next year. Members of Congress and advocates are working to increase funding for programs that help people with I/DD.

Updating the Regulations for Section 504 of the Rehabilitation Act of 1973

On May 6, 2022, the U.S. Department of Education's Office for Civil Rights (OCR) announced its intent to amend the regulations implementing Section 504 of the Rehabilitation Act of 1973 (34 C.F.R. pt. 104). Section 504 is a federal civil rights law designed to protect the rights of people with disabilities in public and private programs and activities that receive federal financial assistance, including schools and postsecondary institutions.

Section 504 states "No otherwise qualified individual with a disability in the United States…shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…." OCR is seeking comments from the public on how to improve the current regulations. OCR requests that long and more detailed comments be submitted by the end of June 2022 but states that all comments submitted before any notice of proposed rulemaking will be reviewed. 

Plain Language:
Section 504 of the Rehabilitation Act of 1973 is an important civil rights law for people with disabilities. The U.S. Department of Education’s Office of Civil Rights is trying to improve how the law works in schools, colleges and other education programs.

ABLE Age Adjustment Act

The Achieving Better Life Experience (ABLE) Act of 2014 created tax-free savings accounts for people with disabilities who acquired their disability before the age of 26. The money saved in ABLE accounts can be used to pay for qualified disability-related expenses such as education, housing, employment training, assistive technology and transportation. Money saved in an ABLE account will not impact eligibility for Medicaid and other public benefits. ABLE accounts are meant to supplement and do not replace private insurance, Medicaid or Supplemental Security Income (SSI) benefits. Before ABLE accounts, most people with disabilities who utilize public benefits did not have a way to save more than $2000.

The ABLE Age Adjustment Act (S. 331 and H.R. 1219) would change the age of onset criteria from age 26 to 46. According to the ABLE National Resource Center, "passage of this legislation would allow an additional 6 million or more people with disabilities to become eligible to open an ABLE account. This critical legislation would increase the financial security of people across the spectrum of disabilities without jeopardizing their much-needed public benefits."

Plain Language:
The ABLE Act lets people with disabilities who became disabled before age 26 to save money. The ABLE Age Adjustment Act would change the law so that a person with a disability before age 46 could have an ABLE account to save money.


The NC General Assembly is in session now but hopes to adjourn by early July.  As expected, there has been discussion and some action on Medicaid Expansion. North Carolina is only one of 12 states that have not expanded Medicaid. Expanding Medicaid in North Carolina would allow the state to provide healthcare to 500,000 more people – this includes about 150,000 people with mental health or substance use issues. This could free up more state resources for people with intellectual and other developmental disabilities (I/DD). 

During this short legislative session, the Senate has passed a medicaid expansion bill: H149, Expanding Access to Healthcare. While it is exciting to see a bill go forward in the Senate, there are some parts of the bill that are of concern and may keep it from being considered in the House. One aspect of the bill would set up a work requirement for the new beneficiaries, something that’s been repeatedly struck down in other states by federal judges. Another section in the bill would make it possible for advanced practice nurses such as nurse practitioners, nurse midwives and certified registered nurse anesthetists (CRNAs) to practice without having a contract with a physician for their supervision. Medical providers oppose this part of the bill. 

While seeing the Senate pass this bill indicates progress toward Medicaid Expansion, the House is unlikely to pass a Medicaid Expansion bill during this short session. What is more likely is that the session will adjourn without passing this. There is talk of coming back in the fall for a special session to address Medicaid Expansion. 

Care4Carolina has a website with good information about Medicaid Expansion. https://care4carolina.com

Plain Language:
Legislators are working on increasing the number of people in NC who can get healthcare through Medicaid. This could help people with disabilities. Not all legislators agree on how to do this, so they may have to come back together in the fall to work on this. 



The Savings Penalty Elimination Act has been introduced by Senator Sherrod Brown (D-Ohio) and Senator Rob Portman (R-Ohio). This is a bi-partisan push to update Supplemental Security Income (SSI) asset limits and would increase the amount of money that SSI beneficiaries can save without being disqualified. Currently, individuals receiving SSI can have no more than $2,000 in assets. Married couples are limited to $3,000. Those figures have not changed since 1984. The bill known as the Savings Penalty Elimination Act would increase those caps to $10,000 for individuals and $20,000 for married couples.

Plain Language:
There are some Senators who are trying to make it easier for people
with disabilities who receive SSI to earn and save money without losing their benefits. They are raising the amount of money that people who get SSI payments can have without penalty.

The Protecting Health Care for All Patients Act was introduced in April. The bill would expand access to treatment and prevent discrimination against people with disabilities by prohibiting the use of “quality adjusted life years” (QALYs) in all federal programs. Currently, only Medicare is prohibited from using QALYs, a metric used to determine the cost-effectiveness of medications and treatment in healthcare. It is a subjective quality of life standard that anticipates a person’s lifespan and usage can lead to denying medications and treatment to people with disabilities.

In 2019, the National Council on Disability (NCD) issued the report Quality-Adjusted Life Years and the Devaluation of Life with Disability: “The lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory.” In an effort to lower healthcare costs, some public and private health insurance providers have utilized QALYs to determine the cost-effectiveness of medications and treatment. QALYs place a lower value on medications and treatments which extend the lives of people with disabilities. In the report, NCD found sufficient evidence of the discriminatory effects of QALYs. The use of QALYs in a state-run program violated the Americans with Disabilities Act.

Plain Language:
People with disabilities may be denied medication and treatment if
“quality adjusted life years” (QALYs) are used to make decisions. The use of QALYs discriminates against people with disabilities in receiving healthcare. Some members of Congress are working to be sure federal programs do not use QALYs.

Money Follows the Person Expansion

The Centers for Medicare & Medicaid Services (CMS) announced it will offer more than $110 million to expand access to home and community-based services (HCBS) through Medicaid’s Money Follows the Person (MFP) program. This notice makes individual awards of up to $5 million available for more than 20 states and territories that currently are not participating in MFP. For states already participating in MFP, like North Carolina, CMS announced an increased reimbursement rate for MFP “supplemental services.” These services will now be 100 percent federally funded with no state share. CMS is also expanding the definition of supplemental services to include additional services that can support an individual’s transition from an institution to the community, including short-term housing and food assistance.

Plain Language:
CMS (The
Centers for Medicare & Medicaid Services) is offering new grants to some states and territories to create programs to help people who live in institutions to move into the community. North Carolina already has this program and will receive more money for providing some additional services.


The NC General Assembly will go into a Short Session on May 18. During the short session, the House and Senate budget writers will propose adjustments to the two-year budget that was passed in the long session. Bill filing deadlines are set in advance, which indicates that the General Assembly is looking to get in and out of session quickly. One of the priorities of the Department of Health and Human Services is the expansion of Medicaid which would increase access to medical and psychiatric services for many people in NC, including people with mental health needs and substance use disorder.

This would potentially free up state dollars that could benefit people with I/DD. Several groups are working to educate and advocate for Medicaid expansion.  Care4Carolina is one of those groups.

Plain Language:
State Legislators will return to work at the General Assembly Building in May for a short session. One item they will talk about is increasing the number of people in NC who can get healthcare through Medicaid. This could help people with disabilities.

Tailored Plans are currently scheduled to begin December. Two key parts of the implementation of the Tailored Plans are Care Management and 1915(i) waiver. Tailored Plan Care Management for people with I/DD will be provided through Care Management Agencies (CMAs) or the Tailored Plan entity. Care Management will coordinate whole-person needs, including physical health, behavioral health, I/DD, TBI, long-term services and supports, pharmacy and unmet health-related resource needs. As mentioned in the last Highlights & Hot Topics issue, the NCCDD along with other I/DD advocacy groups have pushed to include family navigation and peer support as a part of the care team. As a result, a definition of an “extender”has been added to Care Management. We will continue to monitor the impact of this addition since the rates were not adjusted to cover the costs of extenders. The state is working to get CMAs approved and operational so they will be in place for the launch of the Tailored Plans.

The state is working to finalize the proposed service definitions for the 1915(i) Medicaid waiver. These services would create more options for people with developmental disabilities who are Medicaid-eligible. The state’s goal for these services is that they will 1) take the place of the current B(3) services and 2) improve the service array for people with developmental disabilities. These definitions should be out soon for public comment. Following public comment, they will be sent to the Center for Medicare and Medicaid Services (CMS) for approval. This waiver also needs to be approved and in place for the launch of the Tailored Plan.

Plain Language:
The state is getting ready for the new Tailored Plans for people with I/DD. A new Care Management system and new Medicaid services will be a part of the Tailored Plans, These new plans will start in December 2022. There is a lot of work to do before that date.


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This project was supported, in part by grant number 2001NCSCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.

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