Nicole Leblanc

As America moves towards pandemic recovery it is essential now more than ever that we make massive investments in expanding access to home-community based services (HCBS) for kids and adults with autism and other developmental disabilities regardless of IQ, or whether they are at risk of institutionalization. No one, regardless of disability severity, should fall through the cracks. People with higher IQs often have more adaptive functioning deficits and mental health challenges like anxiety and so forth.

Our service system must be reformed into a proactive system that enables people with disabilities and their families to get access to HCBS without being put on waitlists for decades or needing to be in crisis to get services. Community living has been shown to be safer than segregated settings like day programs, group homes, institutions, and so forth. In addition, when people like me live in the community we often live longer and have better health, life outcomes. The COVID19 pandemic proves this when we look at COVID19 risk in segregated settings, those who self-direct their services who may have lower risk of the virus.

What would assist with the need for HCBS is the passage of the HCBS Access Act (HAA), a bill that adds Home and Community Based Services (HCBS) as a mandatory Medicaid service. Passage of this bill would allow for Medicaid to be a mandatory service, enabling people with disabilities to more easily be able to receive in-home care, and live in the community as opposed to nursing homes.

As we reform our system, it is essential that we move from a system-centered model to a truly person-centered system that supports self-determination, self-direction, and individualized support in the community. In order to make this happen, we must invest in affordable accessible housing, public transit, and a highly trained Direct Support Workforce that is paid livable wages, decent benefits like paid sick days, leave, vacation days, tuition reimbursement, and so forth, long with access to paid training on a variety of topics like autism, effective job coaching, self-determination, self-advocacy, health disparities, health promotion and much more.

Being paid a livable wage is a human right. A nation is judged by how a society treats its most vulnerable. A long-term care expansion is essential given that COVID19 is going to lead to more people becoming disabled due to long COVID. Disability is a natural part of the human experience, and we must plan for a society that can accommodate the challenges that come with being disabled.

Expanding access to HCBS and allowing us to buy into it and get access to HCBS via a Medicaid state plan would make my life easier. As a person with autism, anxiety, ADHD, and insomnia, having access to HCBS would make my life easier in that it would allow me to get support with things like cleaning, budgeting, organizing, technology, dealing with life transitions, stress management, medical management, managing public benefits, and resolving tax issues, in addition to things like facilitating meetings, organizing files, preparing and creating presentations, editing, writing things in plain English, and managing deadlines to name a few. In the area of employment support expanding HCBS for all adults with autism would allow people like me to get job coaching that is critical to my success as a professional disability rights advocate when it comes to various work tasks like drafting meeting agendas, dealing with computer malfunctions, and editing written briefs on challenging topics like doctor house call interviews and so forth.

When I lived in Vermont and got HCBS services I self-directed my waiver and found self-direction to be very empowering. It is vital that we expand self-direction and resources available to support people who self-direct their services by hiring and retaining high quality job coaches and support staff that are critical in keeping my anxiety and stress to a minimum. Self-Direction is one of the safest models in the era of COVID19. I call on all members of congress to pass this bill with 400 billion in HCBS unanimously. If we all live long enough, we will all join the “Disability Club.”