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Youth Resources

Youth Resources for Individuals with Down Syndrome in Delaware

This checklist serves individuals with Down syndrome and their families trying to navigate services and community resources. We invite you to explore this list and make notes of what to look into more.

*Please note this is not all encompassing but serves to provide parents and guardians with a starting point.

Any questions regarding the resources on this list, please contact the DSA of DE Outreach Director, Susan Blessington at outreach@dsadelaware.org.

If you are prenatal/have a baby under one year old: Priorities (do these things first)

  1. Contact the DSA of DE Outreach Director, Susan Blessington, to request a prenatal or new parent basket. Her email is outreach@dsadelaware.org. Susan can also connect you with another family if you’d like a parent connect in person or over the phone.
  2. Schedule an appointment at the Down syndrome clinic. The clinic team will assist you with applying for healthcare, scheduling therapy appointments and working with specialists as needed.
  3. Join our parent group on Facebook: Private Parent Group
  4. Medicaid: Applying for Medicaid should be done as soon as your baby is born and diagnosed with Down syndrome. A Social Worker at the hospital where you give birth can and should help you apply.

There are different types of Medicaid – babies and children through age 18 with Down syndrome should have “Children’s Community Alternative Disability Program” Medicaid. It is not based on the families’ income, it is only based on the child’s income so make sure they do not have more than $2000 in their name or they could lose benefits.

If you did not received Medicaid when your baby was born, you can apply yourself or have the Social Worker in the Nemours Down Syndrome Clinic help you apply when you are seen in the Clinic.

There are currently three Managed Care Plans (MCO’s) for Medicaid in Delaware. You can choose between Highmark, AmeriHealth and Delaware First Health. Once you have a plan in place, it is very important to have an Insurance Case Manager (sometimes called a Care Coordinator) so you have one contact. You will need to call your MCO insurance yourself to request this.

    Additional new parent resources:

    Lactation Consultant – Tracy Stadter, RN, IBCLC, Int’l Board Certified Lactation Consultant, specializes in infants with DS, tstadter@hotmail.com or 302-690-0059. Tracy has a son with DS.

    Get connected with our organization for support!

    Down Syndrome Association of Delaware: A community for you! Check out our website for information and events and connect with us:

    Down Syndrome Association of Delaware Specific Resources

    • We offer weekly programming for a variety of age groups, view our offering here. This includes online yoga classes, in person fitness programming and more.
    • DSA of DE offers a $300 yearly scholarship to eligible families to use for recreational programs such as horseback riding, dance, summer camps, etc.
    • DSA of DE also offers an adopt-a-family program during the holidays.
    • Days of Summer Camp:  Offered by the Down Syndrome Association fo Delaware- three week long camps (1 in each county) at no cost to families of children with Ds ages 3-13 and their siblings ages 3-10.
    • DSA of DE Gift Shop:  Gifts for purchase that can be shipped or picked up in Newark DE. DSA of DE swag items and many good made by adults with Down syndrome. Great birthday or holiday gift ideas!
    • The DSA of DE has a free Resource Library with tons of resources to lend out to families. Contact office@dsadelaware.org for more information.
    • DSA of DE offers behavior consults via Zoom with a behavior expert who specializes her practice in working with individuals with Down syndrome. Contract outreach@dsadelaware.org for more details.
    • DSA of DE has complied a preferred provider list – Pediatricians, Optometrists, Dentists, etc. Contact outreach@dsadelaware.org if you’d like access. These come recommended by other DSA of DE families.
    • Past DSA of DE Webinars can be found on on our website. A variety of topics such as financial, legal and medical.
    • We have a Pass Along Facebook Group if you’d like to share any items with other families that you no longer have a need for.

    Priorities for all ages:

    Nemours Down Syndrome Clinic: Sees children with Ds starting at birth, provides access to physicians, social workers, therapists, psychologists, and outreach workers. Can answer questions that your primary care physician may not be able to directly related to Ds. Call to schedule an appointment, details in link.

    Division of Developmental Disabilities Services: Provides access to all home and community services, including respite. Imperative that children with Ds apply as early as possible. More details below.

    Other Organizations You might Find Helpful

    • PIC – Parent Information Center and DE Family Voices: Helps parents navigate the educational system and with IEP concerns.  
    • DE Family Voices operates under PIC and helps connect you with the right people concerning your child’s managed care organization/health plans.
    • Family Shade:  Operates under PIC.  A network of organizations who support children with disabilities.  A great source to see a wide variety of resources in one place.
    • SPARC offered through UD- A neutral voice to facilitate and/or mediate education concerns for parents and schools during IEPS
    • Special Olympics: Offers individual and group sports for children with disabilities as young as 2 years old.
    • Challenger Baseball- ages 4+, adaptive program, offered in: Middletown and Newark 
    • Mary Campbell Center:  Hosts a Children & Youth program for children with Ds and their siblings, such as:  swimming lessons, summer camps, School’s Out Programs, etc.
    • UD Lab Preschool:  An inclusive early childhood education program with developmentally supportive part time or full time programs.
    • Embrace Delaware:  Offers community services, respite and after school activities, social events and more in Kent County
    • Best Buddies: One-to-one friendship and leadership development programs for children with and without special needs.  
    • Buddy Cruise: Hosts an annual conference at sea providing education, resources and fun.
    • DFRC Blue Gold:  Pairs teen athletes with children with Ds for sports and social events. 
    • EasterSeals: Provides therapies, summer camps, assistive technology loan  center, respite and more.
    • Car Seat Fittings:  We have a fitting station coordinator who specializes in fitting children with DS into car seats properly.  Contact Shawn.Rohe@delaware.gov
    • Project Lifesaver Program:  Law enforcement’s rapid response programa for children with Ds who are known to wander/elope. 
    • DECLASI:  Free community legal aid. 
    • The Little Gym:   Offers play and socialization opportunities in the form of classes, ages 10 month to 12 years. Location- Wilmington
    • Federal Park Pass:  Receive a free lifetime park pass for anyone that has a permanent disability regardless of age.  Can be used across the nation.
    • TAP – Totally Awesome Players:  Theater group in Wilmington, hosts a kid’s acting program, ages 10 and older.

    Organizations Who Offer Scholarships/Financial Support/Devices

    • Get Internet | The White House internet credit you may be eligible for
    • Discounted Amazon Prime for qualifying EBT and government assistance recipients Amazon Prime reduced cost account you may be eligible for
    • Tender Hearts of DE:  Assists eligible families with medically fragile children with expenses such as electric bills.  Also can provide assistance with wheelchairs, walkers, crutches, bikes, handicap bathrooms, widening doors, mattresses.
    • Riley’s Foundation:  Provides health education, assistive technology and helps advocate for certain therapies for medically fragile children.
    • Casey Cares:  Delivers a variety of services such as gift cards for groceries, help with vacations, birthday celebrations and more.
    • Go Baby Go:  Program within UD that provides custom made powered cars to babies with DS.
    • UD Assistive Technology (DATI): Adaptive equipment such as communication devices, helps families find assistive tools that meet their individual needs.
    • Seating Clinic At Nemours:  (302) 651-5850, option 1:  Need a referral but can assist with strollers, walkers, etc for children of all ages and sizes.
    • Live Like Little Bill: Offers Halloween outfits for babies in the NICU,, assistive devices and other support. 

    Camp Programs

    • Camp Barnes:  Free camp through Special Olympics, ages 14 and older.
    • Mary Campbell Center: Offers two week camps during the summer at their facility in Wilmington.
    • Camp Fairlee:  Offered by Easterseals in Chestertown MD, ages 6 and up.

    Conferences to Consider Attending:

    • National Down Syndrome Congress:  Hosts an annual convention in a different city every year, a large variety of sessions on topics such as potty training, behavior, education, siblings and more; typically held during the summer.
    • LIFE Conference:  An all inclusive network of groups, usually held in January;  addresses the topics of legislation, independence, community services. Fully virtual 
    • Transition Conference:  An annual event for students with disAbilities to learn about self-determination, self-advocacy, how to run their own IEP meetings and the many choices and options they can make for their future.

    Healthcare and Other Services

    Apply to Division of Developmental Disabilities Services (DDDS) – If you have a child aged 3 through 12 that you believe has an intellectual or developmental disability and you plan on applying to DDDS for services in the future, you can submit a request to the Division to review your child’s information to possibly determine Presumptive Eligibility for Respite Services. There are many terms that you will need to become familiar with including, Child Watch, eligibility, transition, managed care, Medicaid waiver, early intervention, respite, etc. Presumptive Eligibility ends at age 13 and individuals must complete a DDDS to access Respite services and other services (employment services, behavioral, benefits counseling, etc.). Because the application process can be lengthy and individuals are eligible at 13, it is advisable to explore eligibility at that time.

    Additionally you may already have or need to apply for a Managed Care Organization (MCO) that will provide supplemental insurance for your loved ones health care needs. There are currently 3 to choose from in Delaware. Once applied for and received, you can ask to be assigned a Care Coordinator to help you with navigating your child’s healthcare needs and services such as therapies, medical equipment and supplies, diapers, wipes, ADL services.

    Medicaid is an insurance program under DDDS. Medicaid is typically available to individuals regardless of family income status, based on the Down syndrome diagnosis alone. Families are not automatically enrolled, they will either need to work with a hospital social worker or do it on their own. This program is through a children’s Medicaid program called “Children’s Community Alternative Disability Program”. If a family already has a Medicaid plan (because of income), often, a child will not receive the disabled children’s because a Medicaid plan is already established. It is important to apply for the Disability Medicaid option first.

    Contact the Division of Medicaid and Medical Assistance to figure out your coverage options.

    Issues with your applications or concerns about coverage? Join Parent Information Center of DE for one of their MCO calls. This is a forum where parents/caregivers have the opportunity to ask questions and/or discuss issues they are having with their Medicaid MCO (Highmark Health Options or AmeriHealth Caritas).

    ABLE Accounts: a low cost savings plan that allows individuals with disabilities and their families to save for a broad range of expenses on a tax-advantaged basis without jeopardizing their benefits from supplemental security income (SSI), Medicaid and other federal programs. Another resource: National ABLE Resource Center

    Special Needs Trusts – Designed to provide funds for someone with a disability, while preserving their eligibility for important government benefits. Contact an attorney to set up, if you need a recommendation for an attorney, please email us.

    Types of Therapies

    • Speech
    • Physical
    • Occupational/Fine Motor Skills
    • Feeding
    • Aqua – physical therapy in water
    • Music
    • Art
    • Hippo – Involves horses 
    • ABA – Applied Behavioral Analysis Therapy

    Service Providers for Therapies:

    • Theraplay – Location throughout DE
    • Nemours
    • EasterSeals – Offers Speech, OT PT, Feeding therapies and more (both in home and outpatient).
    • New Castle County Community Services:  Contact Heather.Mergenthaler@newcastlede.gov for help accessing community services such as therapeutic riding, art and exercise programs.
    • Art Therapy Express: Pop up art programs and therapy services with art focus, located in Wilmington
    • Kennedy Kreiger (Baltimore)- pediatric feeding disorder clinic

    Miscellaneous

    • Delaware Disability Hub: Search tool for state-wide services. 
    • Children with Medical Complexities: DHSS program. Contact for more assistance. 
    • Practice Without Pressure:  Helps to combat sensory issues during medical procedures. Practice with dental, lab work, haircuts.
    • TSA Cares:  Provides support during air travel, can assist with getting through security. 
    • ABLE Accounts – low cost savings plan that allows individuals with disabilities and their families to save for a broad range of expenses on a tax-advantaged basis without jeopardizing their benefits from supplemental security income (SSI), Medicaid and other federal programs

    When you child is approaching the teen and adult years you should consider contacting the transition team at Nemours so they can assist with navigating the changes in your care. The Transition Coordinator, Lauren Gillepsie is a great resource- Lauren.R.Gillespie@nemours.org. The Center for Special Health Care Needs is also available for patients starting at the age of 13. The clinic is located at Wilmington Hospital but Telehealth visits are available.

    Acronym Guide

    DDDS – Division of Developmental Disabilities Services
    DHSS – Delaware Health and Social Services
    SSI – Supplemental Security Income
    ABLE – Achieving a Better Life Experience Act

    Helpful Phone Numbers

    Division of Developmental Disabilities Services (DDDS)
    302-836-2100

    Nemours Down Syndrome Clinic
    302-320-6300

    Easterseals Delaware & Maryland’s Eastern Shore
    302-324-4444

    Down Syndrome Association of Delaware
    302-995-1004

    Autism Delaware
    302-224-6020

    Special Olympics
    302-831-4653

    ABLE Accounts- State Treasurer’s Office
    302-672-6700

    If you feel your organization may have been omitted, please email Lauren Camp Gates at executivedirector@dsadelaware.org

    Last Updated: April 5, 2023