By Sandi Rosenbaum, Special Education/Special Needs Advocate

Some students who receive special education services are indistinguishable from their typical peers once the school day is over. Others have physical, medical, or neurodevelopmental differences that affect their lives, and those of their families, every day. They require far more supervision and support than their same-aged peers, and these needs are expected to continue for their lifetimes. If your child requires significant supervision and support beyond the school day, they may be eligible for services from the New York State Office for People with Developmental Disabilities (OPWDD).

What Supports are Available?

The most common OPWDD services provided to children and adolescents attending school are caregiver respite in the home or at a programming site (including specialized recreation programming unavailable through other channels, and overnight respite); community habilitation, a 1:1 service to assist them to develop skills for home and community living; and behavioral and crisis supports. OPWDD also funds accessibility modifications to the home such as home elevators, wheelchair ramps, and roll-in showers, and durable equipment such as wheelchair-adapted vans, beds with safety rails, or specialized door locks for individuals at risk of wandering or elopement.

OPWDD services and supports are critical once educational services end at age 21, or even earlier, if the student graduates with a diploma or chooses to leave the school system. Young adults no longer in school may have no options other than OPWDD for supervision, socialization, supports for daily living, and appropriate supports toward gainful employment. Further, when an individual is no longer able to be properly supported in the family home, OPWDD provides a range of housing supports, from 24 hour staffed group homes to supports in one’s own home for adults requiring far less supervision.

A limited array of respite, recreation and crisis services are available immediately upon establishment of OPWDD eligibility. However, most OPWDD services are funded through the Medicaid Home and Community-Based Services (HCBS) waiver. Note that it is possible for children to qualify for the HCBS waiver even if they would not otherwise be eligible for Medicaid based upon family resources. Medicaid coverage will not affect any coverage provided by the child’s preexisting private health insurance, but in those cases becomes a secondary carrier for the primary purpose of affording access to HCBS waiver services.

Who is Eligible? 

OPWDD serves individuals with a developmental disability within the meaning of NYS Mental Hygiene Law 1.03(22). A developmental disability is one of a specific list of conditions – intellectual disability, cerebral palsy, epilepsy, neurological impairment, familial dysautonomia, Prader-Willi syndrome or autism – that a) originated prior to age 22; b) is expected to continue indefinitely; and c) causes a “substantial handicap” in the person’s day-to-day functioning.

Very young children may receive OPWDD services, but their eligibility is considered provisional, and they must reapply for permanent eligibility following their 8^th birthday.

It is important to note that most genetic conditions that are acknowledged as developmental disabilities by the medical community, and in common parlance, among them Down Syndrome, Williams Syndrome, and Fragile X Syndrome, are not recognized under current law to be developmental disabilities in and of themselves. Most individuals manifesting these conditions have an accompanying intellectual disability and qualify for OPWDD services based on the intellectual disability. For those rare individuals who do not meet criteria for an intellectual disability diagnosis, it may be necessary to dig deeper to identify a qualifying diagnosis. However, the recent addition of Prader-Willi Syndrome to the list of qualifying conditions is evidence that the law has changed with stakeholder input.

How Do I Apply?

Applications for OPWDD eligibility are initiated and processed by the six Care Coordination Organizations (CCOs) which provide OPWDD case management across New York State. Check this map to see which CCOs operate in your region and for links to each one. In Westchester County, residents may contact the Department of Community Mental Health to initiate the eligibility application.

OPWDD’s eligibility department will review documentation of developmental disability, beginning with a psychological evaluation including 1) cognitive testing such as the WPPSI, WISC, WAIS, Stanford-Binet scales, or a nonverbal IQ test, and 2) adaptive functioning measures such as the Vineland Adaptive Behavior Scales or the Adaptive Behavior Assessment System. The psychological evaluator may render a diagnosis of intellectual disability based on these testing results. If not, documentation of a qualifying condition from a physician or clinical psychologist will be necessary. A psychosocial report is also necessary and may be prepared by the same psychologist administering the testing. Further, a physical exam report is required; the latest printout from a primary care physician or school physical will suffice.

For school aged children, evaluations performed as part of the special education process can suffice for the psychological evaluation and psychosocial report, provided the information is sufficiently complete and recent; adaptive behavior scores must have been obtained within the past year, while cognitive scores for adolescents may be up to two years old and for adults, up to three years. If updated testing is required, it may be possible to accelerate the timing of the student’s triennial reevaluation or to obtain it from an agency Article 16 clinic such as those operated by Westchester ARC, YAI or AHRC.

More information is available at https://opwdd.ny.gov/eligibility.

How Long Does it Take to Get Services?

Individuals whose OPWDD applications clearly indicate the presence of a developmental disability will receive their eligibility notices within 30 days. Those whose applications are referred for further review can take much longer and may require further evaluations or possibly a Medicaid Fair Hearing.

Once OPWDD eligibility is obtained, families can immediately access non-Medicaid services, including Family Support Services for recreation, respite and crisis support, and certain other respite and recreation programs requiring OPWDD eligibility. The CCO will assist with necessary approvals to obtain Medicaid coverage, if necessary, and Medicaid HCBS waiver enrollment. They will also assist with obtaining service authorizations for the Medicaid waiver services and identifying available local providers. This can take several months.

Many families choose Self-Directed services, assuming greater administrative responsibility for their child’s service plan in exchange for the ability to fund supported participation in inclusive programming geared to the general public; make hiring decisions directly; and to afford an increased wage rate to staff. The family works with an approved self-direction broker to apply for a self-direction budget based on the level of assessed need, chooses the services they would like to fund, and seeks Medicaid service authorizations as appropriate. Because of the customized nature of self-directed programs, the approval process is slower than for traditional service authorizations and it can take several months or up to a year to launch a self-directed program after authorizations are obtained. Moreover, self-direction is currently reimbursement-based; families pay providers and submit receipts to seek reimbursement according to their budget.

The final hurdle to implementing services is identifying available providers; stagnant wages for Direct Support Professionals across OPWDD, combined with the stresses of the COVID-19 pandemic, have created a workforce crisis. Organizations such as the New York Alliance for Developmental Disabilities, NYC FAIR, GROW and local Family Support Services Advisory Councils advocate on behalf of families during the state budget process and year round to preserve appropriate services.

If you have questions about your child’s eligibility or the ability to obtain appropriate services, contact Littman Krooks LLP.