The NYS Medicaid Waiver—Don’t Waive It Away

By Kami-Leigh Agard

On Rockaway Beach Autism Families (RBAF) Facebook page, a parent inquired about the NYS Medicaid Waiver, managed by the Office for People With Developmental Disabilities (OPWDD) for individuals with developmental disabilities, including autism. This waiver, also known as the Home and Community-Based Services (HCBS) Waiver, provides services not typically covered by standard Medicaid, enabling individuals to receive support and care in their homes and communities, rather than in institutional settings. For example, through the waiver program, my daughter receives respite and community rehabilitation services at no cost. Folks, I thank God every day for the added support the waiver provides as for example, we have a respite direct support professional (DSP), who comes to the house, scheduled on days I need to run errands, do chores, even take a shower in peace with the assurance that someone is carefully monitoring my daughter. And quite frankly, some days I do need some “comic relief.” Significantly, for children seeking to enroll, the Medicaid waiver program may waive parental income and resources, allowing more families to qualify for services.

According to the U.S. Department of Health and Social Services, three million children (4.3% of the under 18 population) are living with a disability; and an estimated 18% have special health care needs, resulting from a range of conditions including Down Syndrome, cerebral palsy and autism. These children may require services such as nursing care to live safely at home, therapies to address developmental delays and mental health counseling. The Medicaid Waiver, through a disability-related pathway, helps parents get these much-needed services that private health insurance may not cover.

The Medicaid Waiver has numerous benefits including:

-After-school programs that offer therapeutic benefits such as music, art and aqua therapy.

-Assisted Technology (AT). For example, the Medicaid Waiver provided my daughter with an iPad with apps used to assist her with communication.

-Behavioral support for challenging behaviors. This can come in the form of Community Habilitation, where a specialist from a parent-appointed social services agency comes to the home and works with your child on behavioral issues.

-Respite care. An agency-employed DSP comes to the home to give parents a break, and if needed, helps your child with Assisted Daily Living (ADL) tasks such as bathing, dressing, grooming, toileting, eating and other communal living activities.

-Community Habilitation: Support in the home and community, including learning new skills.

-Case Management/plan of care support services: Coordination of services and development of a care plan.

-Health insurance: As a recipient of Medicaid, your child is covered for health insurance. However, if you have private insurance, in addition to Medicaid, 100% of your child’s private health care is reimbursed.

-Home attendant care

-Prescribed medications are paid for with no co-pay.

-Transportation: Access-a-Ride is available to Medicaid Waiver recipients. Car service and taxi rides to and from appointments may also be reimbursed. In addition, if you have a car, you are allowed an allotted amount per year for expenses incurred taking your child to appointments.

-Family Education and Training

-Training to develop work skills and support in obtaining and maintaining employment.

To be eligible, individuals must meet an “institutional level of care” criteria, meaning they would otherwise require care in a hospital or skilled nursing facility. To start the application process, you have to go through OPWDD’s Front Door (FD), a process guiding families through the steps involved in finding out eligibility, identifying needs, goals and preferences, and a plan for getting those services.

Obtaining the Medicaid Waiver is indeed a tedious process, but totally worth it in the long run. Make sure to make copies of every document you submit and provide one original set and one copy of all documents to the appropriate agencies. (These papers have a way of getting lost in the system, so a duplicate set may save you time and be the difference in being approved or rejected for the Waiver.) And most importantly, make sure all documents are submitted on time.

For more info, contact OPWDD’s Infoline at (866) 946-9733 and ask to be your transferred to your local Front Door Office by telling the operator what county you reside in. Also, visit: https://opwdd.ny.gov/get-started/front-door.

For RBAF’s calendar of upcoming monthly family support group meetings, mental health workshop and other events, visit: Rockaway Beach Autism Families on Facebook/Instagram.