The NYS Medicaid Waiver—Don’t Waive It Away


In my last column and at the Rockaway Beach Autism Families (RBAF) October support group meeting, the topic was Self-Direction Services (SDS) through NYS OPWDD (Office for People With Developmental Disabilities). At the meeting, it was heartwarming to see the number of caregivers who attended expressly to learn more about SDS, a state service offering families the financial flexibility to choose the mix of supports and services that will help their children integrate and live a happy, fulfilling life in the community. However, there was one caveat caregivers learned that evening. Before families can move forward applying for SDS, their child must have a Medicaid Waiver.

According to the U.S. Department of Health and Social Services, an estimated 18% of all children in the U.S. have special health care needs, resulting from a range of conditions such as 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 pay for, such as community rehabilitation, speech therapy and respite care. The Medicaid Waiver has numerous benefits including:

After-school programs that offer therapeutic benefits not provided in school may be reimbursed. These may include music therapy, art therapy, hippotherapy (therapeutic horseback riding). 

Assisted Technology (AT). For example, the Medicaid Waiver allowed my daughter’s school to purchase an iPad with an app used to help her communicate both at school and home. 

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 or specific problems (including Activities of Daily Living – ADL).

Respite care. This agency-employed individual comes to the home to give parents a reprieve to themselves, and if needed, helps your child with bathing, dressing, grooming, toileting, eating, and other communal living activities.

Environmental accessibility adaptation such as funds to modify a home to make it more accessible, with, for example, ramps or grab bars. 

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

Home attendant care at no cost to you.

-Medications: 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.

The Medicaid Waiver affords families all of the above and more, and though a lengthy process to obtain the waiver, it’s totally worth it.

To start the application process, you literally have to go through the Front Door (FD). The FD is the entry way to where  OPWDD connects people to the services they need. The process guides families through the steps involved in finding out if they are eligible for services, identify needs, goals and preferences, and work on a plan for getting those services.

Note obtaining the Medicaid Waiver is a long and tedious process, but it’s totally worth it in the long run for your child. Make sure you 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, on the Medicaid Waiver and OPWDD’s Front Door Process, visit:

Feel free to share your thoughts by emailing: This email address is being protected from spambots. You need JavaScript enabled to view it. or check out Rockaway Beach Autism Families on Facebook. Our next meeting is on Thursday, November 21. Join us in turning the tide for our autism community, one wave at a time.