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, click HERE for details to make an appointment. 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. Explore our Perinatal program where we discuss various topic areas with prenatal and postpartum moms in a private and group forum.

Additional new parent resources:

Lactation Consultant – Tracy Stadter, RN, IBCLC,  Int’l Board Certified Lactation Consultant, specializes in infants with DS, tstadter@hotmail.com/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: 

Join our Private Parent Group

Like our main Facebook group, Down Syndrome Association of Delaware

Follow us on instagram @dsadelaware

Join the DSA text alert system to stay up-to-date with our latest events, news, and announcements! Text DSADE to 57838 to join! 📲

Sign up for your weekly Emails:

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 May 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

The Division of Developmental Disabilities Services (DDDS):  

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 -details HERE. 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:

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

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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