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How Do Recent State and Federal Laws Impact Our Nation’s Caregivers?

Happy and smiling young boy with closed eyes hugging his lovely motherEmily Sagle of Stafford, VA, is a full-time caregiver for her 11-year-old son, William. He’s nonverbal, autistic, and suffers from various medical and genetic conditions that make it difficult for him to attend public school. Due to the amount of assistance William needs each day, Sagle cannot work outside the home.

During the pandemic, Sagle’s family benefited from a federal rule called “Appendix K.” Under this pandemic-era federal Medicaid rule, caregivers received up to 40 paid hours per week based on a calculation that takes into account specific nursing or institutional criteria such as toileting, feeding, and self-care. The reimbursement came from a 50-50 split of Medicaid and state dollars.

The program allowed legally responsible individuals (such as parents who are already legally responsible to take care of their children) to be paid $16/hour to provide care. There was a huge push for this to continue after the pandemic, and it was initially extended until July 2024 in Virginia. With help from Sagle and her family, Delegate Joshua Cole (D-Fredericksburg) sponsored HB 1318, which changes the rules for Medicaid home waivers in Virginia. HB 1318 passed, modifying Home and Community-Based Services Medicaid Waiver rules for a long-term solution. Since then, Delegate Cole also began a dialogue with The ARC to tailor the legislation for maximum benefit for families. Sagle is thankful to Delegate Cole, Governor Youngkin, and lawmakers on both sides who recognized the need for a long-term solution in the form of legislation.

Family Caregivers Need Assistance

Family caregivers work constantly, doing the physical, financial, and other household work to support their loved ones’ ability to remain in their homes and communities. These families demonstrate remarkable resilience and creativity as they juggle caring for their loved one and managing their own health and well-being. Despite their resourcefulness, the financial and emotional burdens are significant.

This is especially true for parents of disabled children and young adults with special health care needs. The ongoing need for specialized care, therapies, and educational support creates a continuous financial strain for these families. In fact, the cost of raising a child with special needs child averages $2.5 million — nearly ten times the cost of raising a child without special needs. These financial pressures often leave families of children with a disability struggling as they grapple with the unique demands of caregiving.

Federal and State Programs to Help Family Caregivers

Caregiving parents of disabled children can access services, improve their children’s development, and better their general quality of life with the help of government programs such as Medicaid waivers, Social Security Disability Insurance (SSDI), and Supplemental Security Income (SSI). While SSI offers assistance based on financial need, helping to meet basic living expenses, SSDI bases benefits on the parent’s work history and Social Security contributions. Medicaid waivers provide access to essential services, such as therapy and in-home care for children with disabilities. Because of eligibility requirements and wait-lists for many programs, early application for these programs is recommended. Below are some federal and state family leave programs for caregivers of children with disabilities:

  • Thirteen states and the District of Columbia have established (but not necessarily yet implemented) a state paid family leave program. All but one use a social insurance policy design that funds these benefits through pooled payroll taxes on employees and/or employers. The states offering this type of program are California, Connecticut, Massachusetts, New Jersey, Rhode Island, Washington, Colorado, Delaware, Maine, Maryland, Minnesota, and Oregon, as well as the District of Columbia.
    • Maryland’s Family and Medical Leave Insurance (FAMLI) Program provides up to 12 weeks of paid leave for employees who need to care for a family member or themselves. The program is set to launch on July 1, 2026. The program will be funded through a new payroll tax and provide up to $1,000 per week for eligible employees with certain life events such as health conditions or family caregiving responsibilities. Additionally, employees may be eligible for an additional 12 weeks, allowing up to 24 weeks in some circumstances if necessary.
    • In 2020, the District of Columbia began administering paid leave benefits. As of October 1, 2022, the DC Paid Leave Act provides up to 12 weeks to care for a family member with a serious health condition, 12 weeks to care for your own serious health condition, and other benefits for pregnancy.

Virginia’s Recent Caregiving Laws Focus on Those with Disabilities

As mentioned earlier, parents/guardians of minors were able to be paid for personal care in all waivers during the pandemic. Virginia is in the process of making these changes “permanent” (although of course nothing in government is ever permanent), passing several pieces of legislation to remove some of the original requirements of the program. More information is available here.

House Bill (HB) 577 and Senate Bill (SB) 610 extend the time period that individuals may hold their waiver while they look for a provider to ensure that those granted a waiver can fully utilize it. HB 908 and SB 676 adjust financial considerations for those with developmental disability waivers to expand resources available. HB 909, SB 488, and HB 1318 increase flexibilities for reimbursements so that loved ones can care for those on a waiver by modifying Home and Community-Based Services Medicaid Waiver rules.

Virginia Medicaid Waivers for People Under 65 with Disabilities

In the meantime, here are Virginia’s current Medicaid waivers for people under 65 with special needs:

Developmental Disability Waiver

Virginia’s developmental disability waiver serves adults under age 65 with a developmental disability and children with a substantial developmental delay or specific congenital or acquired condition. Under the umbrella of the Developmental Disability Waiver Program, there are three waivers that provide a continuum of services:

  • Building Independence (BI) Waiver;
  • Family & Individual Support (FIS) Waiver;
  • Community Living (CL) Waiver.

Virginia Medicaid administers these three DD Waivers along with the Virginia Department of Behavioral Health and Developmental Services, and there are waiting lists for all of these waivers.

Virginia Adult Medicaid Waivers

Virginia has the following adult waiver programs that the Farr Law Firm Elder Law attorneys help clients obtain:

The CCC plus waiver is Virginia’s primary Home and Community-Based Services (HCBS) waiver offering supports and services to the following groups of individuals:

  1. Older adults;
  2. Individuals who have a physical disability; and/or
  3. Individuals who need the nursing home “level of care” but I receiving this care at home.

Maryland Programs for Disabled Children and Their Families

In 2024, 20,500 Marylanders with developmental disabilities and their families received a waiver to help their families afford services. 3,632 families choose “self-direction,” which lets them determine how to best support their disabled relative without the guidance of a program, so long as they use those funds on accepted services such as hiring support staff to help with day-to-day activities of the individual with disabilities. The waiver recipient, or a designated representative, takes on the responsibility of organizing those services.

In many self-directed families, a relative may take on several roles to provide care for their loved one. A proposal enacted November 2024 included a change that allowed family members to be both a caregiver and designated representative for a waiver recipient.

These are some other waivers to help Marylanders with disabilities and their families (and long waiting lists for all of these waivers):

  • The Community Pathways Waiver and Community Supports Waiver both help participants live more independently in their homes and communities. The programs provide a variety of day, support, and residential services that promote community living, including the self-directed service model described above and the more traditional agency-based service model.
  • Through the Family Supports Waiver, legally responsible individuals, including parents and guardians, are able to provide up to 40 hours a week of community development services or personal supports.
  • The MD Waiver for Children with Autism Spectrum Disorder provides “residential habilitation, respite, adult life planning, environmental accessibility adaptations, family consultation, intensive individual support service, and therapeutic integration services to individuals with autism ages 1-21 years who meet an ICF/IID level of care.” New this year, on the Autism Waiver application, it states that “(t)he State may make payment to a legally responsible individual, who is appropriately qualified and employed by a Autism Waiver Provider Agency, for providing extraordinary care for Intensive Individual Support Services.”

Maryland Adult Medicaid Waivers

Maryland also has the following adult programs that the Farr Law Firm Elder Law attorneys help clients obtain:

Washington, DC, Programs for Disabled Children and their Families

The District of Columbia currently has one program that is open to children. It is a TEFRA program that waives parental income. The TEFRA/Katie Beckett waiver program is for certain children who have long-term disabilities or complex medical needs and live at home. It allows children to receive services at home with additional supports, instead of in an institution. Under TEFRA/Katie Beckett, only the child’s income and resources are considered (not those of the parents). For more information on TEFRA/Katie Beckett, please read the TEFRA/Katie Beckett Fact Sheet and Frequently Asked Questions document.

DC also has the following adult programs:

Are You a Family Caregiver for a Loved One with Disabilities in Virginia, Maryland, or DC?

If you or a loved one is disabled, it is wise to consider creating a Special Needs Trust as part of your overall trust and estate planning in Virginia, Maryland, or DC. A Special Needs Trust is an essential tool to protect a disabled individual’s financial future. Also known as “a Supplemental Needs Trust,” this type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the disabled person. Special Needs Trusts fall generally into these main categories:

  • Third-Party SNTs that one person creates and funds for the benefit of someone else. The Farr Law Firm Special Needs Planning attorneys can help you create this type of third-party special needs trust for your loved one with disabilities.
  • First-Party SNTs (also called d4a trusts) that are created for the person with special needs using that person’s own money. As mentioned previously in this article, now, people with disabilities can create their own first-party special needs trusts without having to rely on others. The Farr Law Firm Special Needs Planning attorneys can help you create this type of first-party special needs trust for your loved one with disabilities.
  • Pooled third-party trusts are an alternative to setting up your own special needs trust if you can’t come up with a good choice for trustee or if you are only putting a small amount of money into the trust. The Farr Law Firm Special Needs Planning attorneys can help you join this type of first-party special needs trust for your loved one with disabilities.

Read more about Special Needs Planning here.

Plan Ahead for Yourself and Your Loved Ones

If you’re a caregiver for a loved one with disabilities, it is wise to plan in advance. When it comes to Special Needs Planning in Virginia, Maryland, or DC; Trusts and Estate Planning in Virginia, Maryland, or DC; and Medicaid Planning in Virginia, Maryland, or DC, let the Farr Law Firm guide you through this complex process.

Trusts and Estates Attorneys Fairfax, VA: 703-691-1888
Trusts and Estates Attorneys Fredericksburg, VA: 540-479-1435
Trusts and Estates Attorneys Rockville, MD: 301-519-8041
Trusts and Estates Attorneys Annapolis, MD: 410-372-4444
Trusts and Estates Attorneys Washington, DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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