Our service system must be reformed into a pro-active 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, such as 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 COVID-19 pandemic proves this when we look at COVID-19 risk in segregated settings compared to those who self-direct their services who may have lower risk of the virus.
As America moves towards pandemic recovery, it is essential now more than ever that we make massive investments in expanding access to home and community based services (HCBS) for kids and adults with autism and other developmental disabilities. No one–regardless of disability severity–should fall through the cracks.
As we reform our system, it is essential that we move from a systems-centered model to a truly person-centered system that supports self-determination, self-direction, 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. A sustainable Direct Support Workforce would be paid livable wages and decent benefits, such as paid sick days, leave, vacation days, tuition reimbursement, and access to paid training on a variety of topics, including 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 COVID-19 is going to lead to more people becoming disabled due to Long COVID and other applicable social determinants of health. 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 access HCBS via Medicaid state plan would make my life easier. When I lived in VT 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 available to support people like me who self-direct their services in hiring and retaining high quality job coaches and support staff. These resources are critical in keeping my anxiety and stress to a minimum.
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, such as drafting meeting agendas, dealing with computer malfunctions, editing written briefs on challenging topics (i.e. doctor house call interviews). In addition to things like facilitating meetings, organizing files, preparing presentations, editing, writing things in plain English, managing deadlines to name a few.
As a person with autism, anxiety, ADHD, and insomnia, having access to HCBS would bring significant ease in that it would allow me to get support with things like cleaning, budgeting, organizing, technology support, dealing with life transitions, stress management, medical management, managing public benefits, transportation to places not easily accessible via public transit, resolving tax issues, and other complex problem that come up on a day-to-day basis.
Self-Direction is one of the safest models in the era of the COVID-19 pandemic and beyond.