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What Happens When They're Older?

What Happens When...

my child starts missing developmental milestones or has an established condition that may impact development?

If you notice or have concerns that your child isn’t meeting CDC’s Developmental Milestones, talk with your child’s doctor or refer directly (as the parent/caregiver) to early intervention services for children from birth to 36 months of age. The referral process for the NC Infant Toddler Program (NC ITP), also referred to as “Part C,” is initiated by contacting your local Children’s Developmental Services Agency (CDSA). Parents or physicians can refer children by phone, fax, letter, in person at the local CDSA office, or by completing and submitting the NC ITP Referral form to your CDSA. The CDSA offers free evaluations and free or reduced-cost services and therapies for children up to the age of 3 in your home (or private preschool settings, if enrolled).  You can also pursue specialized educational and therapeutic programming, if you are located in Guilford County (GCPA) or Forsyth County (The Centers for Exceptional Children). Families may also contact private agencies to access services, such as speech therapy, OT, PT, ABA, etc., that may be funded by insurance or private pay.

Discuss eligibility for the CAP/C waiver with your Early Intervention Service Coordinator or any other case managers/providers. Obtain an application by calling NCLIFTSS at 833-522-5429 or emailing NCLIFTSS@Kepro.com.

Children can transition out of the North Carolina Infant Toddler Program (NC ITP)/Part C, when they are no longer in need of the supports or services through the NC ITP or when they turn three years of age. All children must transition out of the program by age three. 

At age three, there are several options available to families for developmentally appropriate caregiving and education, including public school district-based Exceptional Children’s Preschool Services (also referred to as “Part B,” which are services for school-age children ages 3 to 21), Head Start, Early Head Start, private preschool/childcare programs, the NC Pre-K program (program is limited to the year before Kindergarten start) or other appropriate services (all with varied levels/tiers of support according to your child’s needs). For children found eligible under NC ITP/Part C: As your child nears 2 years and 3 months of age, your Early Intervention Service Coordinator will help you determine the next steps for your child and guide you through this transition. The transition from the NC ITP is dependent on whether continued concerns are evident for a suspected disability. If a parent agrees and there is a suspected disability, a child may be referred to the school system for a referral to determine the need for evaluations or access private therapies (funded by insurance or self-pay). 

If a child receiving early intervention services might be eligible for public school district-based Exceptional Children’s Preschool Services/Part B, the NC ITP will hold a meeting with the NC ITP, the family, and the local education agency (LEA) between 90 days and 9 months before the child’s third birthday to discuss any services the child may receive under Part B. [See the NC ITP Transition Policy for information related to preschool and other services for children and families transitioning from Part C (NC ITP/early intervention services) to Part B (school services starting at age 3).]

Even if your child is not a part of the CDSA or any other type of services, starting at age 2 years 10 months and forward, your child can be referred/self-refer to your school district’s EC Preschool Division if you have concerns with their development, even though services can’t begin until age 3.

There are several options to consider when a child is ready to start kindergarten (must turn 5 on or before August 31 of the current year):

To enroll in a public or charter school, go to ​​​​Enrollment Info for Parents. The NC Department of Public Instruction’s Office of Early Learning has created a Kindergarten transition guide to support families with family-friendly resources on age-appropriate developmental skills, support tips, at-home activities, and a transition timeline. 

For children needing an Individualized Education Plan (IEP) or Section 504 Plan, it is best to meet with the school in April or May of the preceding school year to allow time to prepare and develop the best plan and have all necessary services in place before August. The Exceptional Children’s Assistance Center is a great resource for preparing for these meetings, and it also has Parent Educators who can assist with questions. 

For families interested in pursuing a private school, there are 2 education grants in NC, the Education Student Accounts (ESA+) Program for children with special needs, and the Opportunity Scholarship for any child in NC. 

Families interested in homeschooling can review the Home School Requirements & Recommendations to initiate the process. 

Depending on your child’s provider and health system, you will lose access to you child’s medical records at either age 12 or 13. You will need to work with a provider within your health system to determine the best way to regain access for your family’s situation. Typically, this involves signing a release of information and, when possible, a provider asking your child for permission.

This is also the time to begin discussions with your child’s medical team regarding transition of care and the challenges/barriers that may need to be addressed along the way. The Common Principles of Transition | Child Neurology Foundation is a wonderful resource to help facilitate the discussion and guide steps along the way.

Suppose your child will be unable to make decisions on their own once they reach the legal age of 18. In that case, you can explore two paths for ensuring that there is no lapse in decision-making ability for financial or health care-related decisions for your child and that, if appropriate, a guardian can legally assume decision-making responsibilities at the level appropriate for your individual child. Some 18 year olds may retain some level of decision-making, and others will transfer all decision-making responsibilities to a legal guardian. These options can be explored here: Guardianship | North Carolina Judicial Branch

Alternatively, some children may instead rely on community supports and other resources for maintaining decision-making independence. These options can be explored here: Alternatives to Guardianship

On the first of the month following your child’s 18th birthday, if they were not previously receiving SSI benefits, then they can apply as an individual family (not counting parent income). Here are some resources on applying for SSI:

SSI/SSDI Benefits Q&A (on demand recording) – DRNC

Medicaid, SSI or Disability Benefits – DRNC

Maximizing your SSI/SSDI Benefits – DRNC

Apply for Supplemental Security Income (SSI)

If your child has any income from SSI or any other means and has a disability, then an ABLE account may be beneficial. The ABLE National Resource Center has information on these types of accounts. You aren’t required to use the ABLE account in your state – you can often use ones from other states, if you prefer.

Some pediatric providers will transition your child to adult providers at this point. Others may continue to see them for another year or two. If you haven’t already begun a transition plan to adult providers, now is the time and this guide may be helpful: Common Principles | Child Neurology Foundation

In NC, individuals can stay in school until age 21. NC DHHS: Employment and Independence for People with Disabilities (EIPD) (formerly Vocational Rehabilitation) is often automatically pulled in for planning in public high school but you may need to refer your child yourself. You can find your local office here: EIPD Local Office Listing

If your child can move on to a college environment, be sure to reach out to the college’s disability services to see what accommodations can be brought with them into college academically and what they may need and qualify for in terms of housing accommodations. Some colleges offer unique programs to allow individuals with intellectual disabilities to further their education and prepare for living independently such as Integrative Community Studies at UNC-Greensboro.

EIPD can also assist with setting up inclusive employment opportunities. There is a list of employers in our Resource section that provide inclusive employment opportunities. This After High School Action Plan may help with developing a plan to meet your child’s individual needs.

When your child turns 20, there should be a formal plan in place for aging out of CAP/C and making a transition to Community Alternatives Program for Disabled Adults (CAP/DA) or NC Innovations Waiver. In order to transition to the Innovations waiver, you must already be on the registry of unmet needs/waiting list. Check with your local LME/MCO (located on your child’s Medicaid card) to verify your child’s Innovations status and/or start the application process to be placed on the waitlist. 

When transitioning out of CAP/C, your child is guaranteed an evaluation and placement into CAP/DA, if they are deemed eligible, and will bypass any waitlist. There are CAP/C-to-Innovations transition slots, but the slots are limited to a certain number each year. You should contact your LME/MCO in July of the fiscal year (July to June) that your child will be turning 21 to reserve a slot for them. 

Unlike CAP/C, both CAP/DA and Innovations have slots assigned by county and not state-wide, so you must coordinate any moves within the state ahead of time to ensure a smooth transition.

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