By Arshi Pal, Esq., Littman Krooks LLP

Medicaid Home and Community Based Services (HCBS) waivers allow individuals who are otherwise eligible for Medicaid to receive supports and services in the home and community setting, instead of being served in an institution-like or more restrictive setting. HCBS waivers provide, among other things, supportive employment, integrated day services, direct personal assistance, services to promote independence and participation in the broader community, transportation services, respite services, caregiver and family support, case management, medical and nursing services, behavioral health and crisis intervention services, peer support services, housing support, assistive technology and transition services. Congress authorized these waivers in 1981 to reduce the cost of services and expand coverage.

Unfortunately, many individuals who do eventually receive the waivers remain without services for extended periods of time due to lack of resources, providers and funding. Although the waivers are authorized by the Federal government, Congress delegated the implementation for the waivers to individual states. Due to this delegation of authority, each state has its own set of rules and providers to be eligible for the waivers and to receive services through them. Due to the varying rules from state to state, individuals who were receiving services in one state may have to reapply and put on a waitlist when they move to another state. Such lapse in services can be devastating for individuals with disabilities who depend on routines and consistency.

Proposed Legislation Aims to Improve Services

Recognizing the harmful effect of the long waiting periods, President Biden drew attention to this matter during his campaign in 2020. He sought to eliminate the waitlists for disability services provided by Medicaid. Earlier this month, House of Representative, Debbie Dingell, Senator Maggie Hassan, Senator Bob Casey, and Senator Sherrod Brown Jr. proposed a draft bill, the HCBS Access Act of 2021, to begin discussion on setting standards and requirements to provide basic services and consistency among the states. The proposed bill cites as  its purpose:

• to require coverage of home and community-based services under state plans to ensure individuals with disabilities and older adults live in the most integrated setting without delayed access to necessary services and rights;
• to provide medical assistance for those whose income and resources are insufficient to meet the costs of necessary medical services and rehabilitation;
• to ensure individuals with disabilities attain and retain the capability to independence and self-care;
• to ensure individuals with disabilities receive the services they require to live in their community;
• to streamline access to HCBS by eliminating need for States to repeatedly apply for waivers; and increase the capacity of services available in the community to individuals with disabilities.

Significantly, the proposed bill also underscores the need to “support 65,000 unpaid family caregivers who are often providing complex services to aging adults and people with disabilities because of a lack of affordable services, workface shortages and other inefficiencies of the Medicaid system.” It also focuses on improving direct care work quality and eliminating race and gender disparities in accessing information and services. The proposed legislation also aims to ensure a living wage for individuals furnishing home and community-based services and to ensure access to services. The draft legislation also emphasizes the need for more federal funding to states to ensure baseline of home and community-based services nationwide.

The current draft of the legislation requires some work. However, the goals of this draft legislation are commendable as, currently, applying for Medicaid waivers and receipt of services can be a daunting undertaking. Unfortunately, many individuals who are eligible for services do not know where to begin or eventually lose hope waiting for services to initiate. In such a situation, an experienced special needs attorney and advocate can help make the process easier. Contact us with questions at 914-684-2100 or contact us online .

To view the text of the draft legislation click here: https://debbiedingell.house.gov/uploadedfiles/hcbs_access_act.pdf

For a summary of the bill click here: https://autisticadvocacy.org/wp-content/uploads/2020/12/HCBS-Access-Act-One-Pager-12.15.20.docx.pdf