Transition to Adult Care — Outpatient Specialty Care and Primary Care

Patient with Suspected or Diagnosed Intellectual Disability, Developmental Disability (Delay) or Autism

Developmental delay is a term used in early childhood (most often the first 5 years of life) to indicate that a child is behind the average age range for achieving developmental milestones. The term is used in young children because developmental test results in young child can vary significantly over time and some children will achieve typical development. Individuals older than 5 should be given a more specific diagnosis (learning disability, language disorder, intellectual disability) as there is less variability in test results over time in older children, adolescents, and adults.

Patients with an intellectual disability (ID), developmental disability (DD) or autism are often eligible for additional services that can help them live successfully in the community, pursue higher education and/or become employed. These services can also help with caregiving and behavioral health needs which improve quality of life and reduce stress on their family members and caregivers. In order to ensure eligibility for appropriate services, documentation of an accurate diagnosis and IQ should be obtained before the patient turns 18. When considering patient needs using the table below, consider a social work referral if the patient or family may have difficulty accessing the needed service.

Patient Needs Pennsylvania New Jersey
  • Patient has a suspected intellectual or developmental disability, but no documentation of IQ
  • Refer to social work to locate or refer for needed testing
  • Patient has a confirmed IQ < 70 (intellectual disability)
  • *Some patients with autism or DD may also have IQ < 70
  • Refer to county disability agency
    • All ages - Office of Developmental Programs (ODP)
  • Refer to county disability agency
    • 18 yrs or older - Division of Developmental Disabilities (DDD)
    • Under 18 yrs - PerformCare, run by the NJ Department of Children & Families (DCF)
    • 18-21 yrs – refer to both DDD and PerformCare
  • *Some patients with autism or DD and IQ > 70 (slightly above) may be eligible
  • Patient has an Individualized Education Program at school (IEP)
  • Inform parents that the IEP must include a transition plan, beginning at age 14
  • Age 14-16 is a good time to ensure that IQ testing is available and up-to-date
  • Behavioral health (BH) supports
  • *If BH needs are being managed by a behavior health specialty provider, refer patient back to specialist for transfer plan.
  • If patient has Medicaid, refer to public Behavior Health insurance. In Philadelphia, it is Community Behavior Health.
  • See above reference for Perform Care
  • Assistance with coordinating care or additional in-home support.
  • Refer patient to Case Manager at Special Needs Unit (SNU)
  • Refer patient to Care Manager at Medicaid Managed Care Organization
  • Assistance with medical decision making for 18 years or older (guardianship or power of attorney)
  • Refer to social work for discussion, verification of documentation, and documentation in EPIC media section, if applicable.
  • Structured program (after high school graduation)
  • *planning can begin at least 1 year prior to graduation
  • Refer patient to Office of Developmental Programs (ODP)
  • For 18 yrs or older - refer to Division of Developmental Disabilities (DDD)
  • Under 18 yrs – refer to PerformCare, run by the NJ Department of Children & Families (DCF)
  • 18-21 yrs – refer to both DDD and PerformCare
  • Vocational support
  • *planning can begin at least 1 year prior to graduation
  • Refer patient to the Office of Vocational Rehabilitation (OVR)
  • Refer to NJ Division of Vocational Rehabilitation Services (DVRS)
  • Higher education support
  • *planning can begin at least 1 year prior to graduation
  • Refer patients to Think College  
  • Also, consider referral to OVR (in PA) or DVRS (in NJ)

Key

IEP: Individualized Education Program, which is required for every student receiving special education services. This document is developed as a collaboration between the school, parents and student (as they are able), and outlines educational goals for the year and how they will be met, as well as any additional supports that will be provided to the student (such as occupational therapy, physical therapy, speech therapy and/or assistive technology, and should include an IQ score)

CM: Case manager or care manager at Medicaid Managed Care Organization who is assigned to the patient to assist with coordination of care and obtaining needed services.

SNU: Special Needs Unit – Units in all PA Medicaid Managed Care Organizations responsible specifically for helping patients with special healthcare needs coordinate care and obtain needed services

County disability agencies: Office of Developmental Programs (ODP) in PA, Division of Developmental Disabilities (DDD) in NJ [or for under 18, PerformCare, which is run by the NJ Department of Children & Families (DCF)] – For those eligible, these are the primary funding sources for services after high school graduation (Such as: community services, in-home supports and others).

SC: Service coordinator at county disability agency, who is responsible for overseeing the patient’s case and ensuring that they are receiving the necessary supports for their needs (Such as: community services, in-home supports and others)

OVR (Office of Vocational Rehabilitation) and DVRS (Division of Vocational Rehabilitation Services): Assist with supports for obtaining competitive employment (such as: training programs, job coaching, assistance with finding jobs, etc.)