What services are available to New York City’s younger special needs children?

New York City special needs planning attorneys can help parents of disabled children with legal issues including guardianship, trusts and more. But there are many additional resources available—if only overwhelmed parents knew where to turn for help.

Accessing supports and/or services requires a screening, evaluation, and official diagnosis. The term “special-needs” generally refers to an umbrella of intellectual and/or developmental disabilities, diseases, or conditions including but not limited to Down syndrome, cerebral palsy, and autism spectrum disorders (ASD). In some cases, a disability is apparent at birth and other times it becomes apparent over time–often when typical developmental milestones are not met. Frequently, the discussion as to whether a child might have a developmental disability (“DD”) or intellectual disability (“ID”) starts with a parent’s gut feelings or a pediatrician’s exam.

Depending on the age and presentation of the child, the pediatrician may refer the child for an evaluation by a developmental pediatrician, neurologist, psychiatrist, or psychologist to make a medical diagnosis of a particular disability. Such professionals specialize in evaluating, testing, and treating those with IDs or DDs, including the broad spectrum of ASD.

Because the waitlist for these medical professionals is often many months long, parents may wisely reach out to government agencies for faster screening and assessment times while they wait for a confirming medical diagnosis, so that support services can begin as soon as possible in children who qualify. The earlier intervention starts, the better the outcome for the child.

Some of the services children may need include but are not limited to occupational, physical, and/or speech therapy, Applied Behavioral Analysis (ABA) therapy, and more. Some therapies may be offered in a school setting while others may not. Some therapies are offered free of charge and others may require payment, so always ask and then check with your medical insurance carrier for coverage.

What NYC agencies can help me?

Where you go first depends on your disabled child’s age.

Birth to 3 years old:
Seek services through the NYC Early Intervention Program (EIP), which is administered by the NYC Department of Health and Mental Hygiene (NYCDOHMH). Call 311 to get started.

Your child’s development will be evaluated in five (5) areas: Cognitive, Speech/Language, Adaptive, Social/Emotional, Physical.

An initial service coordinator will be assigned to help you through the referral and evaluation process and, if your child is deemed eligible for the EIP, then they will develop a family service plan (IFSP) individualized for the supports your child needs. Then, you choose an ongoing service coordinator who makes sure you get the IFSP services, refers you to other helpful resources, and eventually helps you transition out of the EIP. Services will be delivered in natural environment settings like at home or daycare on a year-round basis.

3-5 years old:
Seek services through the Committee on Preschool Special Education (CPSE), which is administered by the NYC Department of Education (NYC DOE). If you are already in the EIP, your service coordinator will help with the referral. If not, you can write to the CPSE in your school district or can ask your local Early Childhood Direction Center to help with a referral.

Your child’s development will be evaluated in five (5) areas: Cognitive, Speech/Language, Adaptive, Social/Emotional, Physical. In addition, a psychological evaluation and a social history will be completed, along with other possible assessments as needed.

CPSE will forward you a packet explaining the program, your rights, and steps you need to take, including choosing an evaluation site. CPSE may assign one of your child’s service providers to coordinate all services rendered. After the evaluations, a meeting is held to determine the services your child should have in their Individualized Education Plan (IEP). The CPSE must provide the services in the “least restrictive environment”, considering placement with similarly-aged children without disabilities when possible before a setting with only preschoolers with disabilities. Services are provided during the school year and sometimes for part of the summer.

5-18* years old:
Your child would transition from CPSE to CSE for K-12, which operates similarly to CPSE, but for elementary and secondary education rather than preschool. Annual CSE meetings are held and new IEPs are created to support your child’s ongoing needs and goals.

What other supports are available?

OPWDD: One of the first things parents of special needs children should do after receiving a diagnosis is contact their local chapter of the New York State Office for People with Developmental Disabilities (“OPWDD”). The number for the Manhattan chapter Front Door Office is 646-766-3220.

Ask for the “Front Door”. Aptly named, it’s the place you first enter the system to access services and supports for which your child is deemed eligible. While some supports and services– like employment, day services, and housing– would not yet apply for the very young, others may be available.

If eligible, and depending on your child’s particular circumstances, supports may include:

  • Family Support Services (FSS) such as in-home respite, weekend respite, after-school respite, and/or a voucher reimbursement you apply towards approved activities or classes;
  • HCBS waiver services,
  • Individualized support services,
  • Care at home waiver services, and other services.

Don’t worry if you feel confused. All applicants are required to attend an information session to become familiar with the process. So, take the first step and call the Front Door number today.

In addition to OPWDD, there are other helpful government agencies that are a wealth of information about available supports, services, and resources. Parents of a child with a disability who live in New York City, might want to review and bookmark the following helpful websites/links*, particularly the Dept. of Health’s PDF Family Resource Guide:

https://opwdd.ny.gov/access-supports
https://www.nyc.gov/site/doh/health/health-topics/early-intervention.page
https://growingupnyc.cityofnewyork.us/programs/early-intervention-program/
https://www.schools.nyc.gov/
https://www1.nyc.gov/assets/doh/downloads/pdf/earlyint/family-resource-guide.pdf

*Please note the above links and resources are provided for informational purposes only and are not an endorsement of any particular program or agency or a guarantee of eligibility for same. Programs and services may have changed or been discontinued at any time since publication. Parents should always do their own research.

There is great debate in the autism community as to whether ASD is genetic or whether it may be caused or exacerbated by exposures to toxins. Those interested in learning more about dietary and/or medical interventions that some ASD parents and medical professionals believe may improve or even reverse some ASD symptoms, may want to explore Talk About Curing Autism (“TACA”) and its informative PDFs called “blueprints” here.

When your young child is diagnosed with an ID or DD, you’ll feel lost, overwhelmed, and scared. Reach out to the appropriate agencies for help today.

MUST HAVE PLANNING: Accessing services and supports is not the only important consideration when you have a child (or grandchild) with special needs. Choosing and timely implementing the right special needs trust for your disabled loved one is crucial to ensuring their continued eligibility for government benefits and safeguarding funds to provide them with a better quality of life. Equally important is having a comprehensive special needs estate plan in place.

For more information, download our FREE report of 10 Must Have Documents for All Parents of Special Needs Children.

At Sverdlov Law, we are dedicated to helping our clients get the peace of mind that comes with getting their affairs in order, preserving their assets, and protecting their families. From our office on Wall Street, we represent clients throughout New York City and New York State in all aspects of estate planning, estate administration, Medicaid planning, elder law, and business succession matters.