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Teen and Adult Resources

This checklist serves individuals with Down syndrome and their families struggling to navigate services and community resources. The main goal of this checklist is to provide a condensed informational resource for various aspects of the individual’s life so applicable elements can be explored further.

Please note this is not all encompassing but serves to provide self-advocates, parents and guardians with a starting point.

Priorities (Do these things first):

  1. Schedule a tele-health or in-person visit with the Teen/Adult Down Syndrome Clinic at Wilmington Hospital (if you are closer to Philadelphia, then Jefferson has a Down Syndrome Program as well)
  2. Explore the Down Syndrome Association of Delaware– we offer cooking classes, Down to Box and fitness programs, dances, day trips and more! Email programs@dsadelaware.org for more details on activities
  3. 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. 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.
    1. A Community Navigator is provided to you, through The Columbus Organization, once you are approved and they connect you to community resources. The Division of Developmental Disabilities Services has contracted with The Columbus Organization to provide Targeted Case Management with the goal of supporting individuals in the context of their families. A Community Navigator supports by working with the family in developing a Person-Centered Plans (PCP) that captures the needs and goals of the individual and family unit; helping to identify community resources for unmet needs; assisting families to learn about eligibility-based services. The Community Navigator is the individual’s key contact with the Division of Developmental Disabilities.
  4. Obtain an DMV Identification Card
  5. Learn more about Medicaid – consider if it is right for you or the individual, Medicaid provides access to Home & Community based services such as a day program or employment supports, this is also a low-income medical insurance for families that meet that criteria, explore Modivcare (transportation)
    1. A Managed Care Organization Case Manager can be assigned- you just have to call member services and ask for one. They are social workers and nurses who can help with resources and any problems with the medicaid
  6. Understand difference between the Division of Medicaid and Medicare Long Term Care Support and Services Waiver (LTSS) Vs. the DDDS Lifespan Waiver
  7. Apply for Social Security Benefits (18 years and older- the sooner the better) to be eligible for Social Security Income, if you applied the first time but were denied, re-apply or file an appeal within 60 days- apply again and again (moves up chain of command, and can be paid retroactively.)
  8. Explore SSI
  9. Transition Program – The Nemours Transition Program is extremely helpful with the changes your child will have when transitioning to the Adult world. At age 16 to 17, you can call the Transition team at 302-651-4812 for a phone consult.  At Age 18 or older call to schedule an in person appointment to  discuss adult services including medical, waiver, SSI, guardianship, power or attorney, assistive technology, obtaining an ID and ways to help your young adult become more independent.  

Health and Medical Care and State Services

Considerations: Are your physicians covered under the insurances you are using?

Assistive Technology

Employment

  • Division of Vocational Rehabilitation (DVR) this is a branch of the Department of Labor and is federally funded. It helps individuals with disabilities secure employment.
  • Division of Visually Impaired (DVI) has a Vocation Rehab department
  • Learn more about the Workforce Innovation and Opportunity Act (WIOA)
  • DDDS/DVI/DSAAPD manages Pathways to Employment (eligible with Medicaid, can start at age 14) – provides Employment Navigator, internship opportunities, workplace support, other employment supports as well
  • THRIVE– Employment placement services, based in Middletown

Considerations: remember that your plan and goals drive the services you utilize.

Housing

  • Apply to DDDS (see above) – funds residential services through their Home and Community based waiver, the Lifespan Waiver, you have to meet the level of care to receive any of the services through the waiver
  • Housing and Urban Development
  • Section 8 – Kent and Sussex counites, reduced rent properties
  • Delaware State Housing Authority (several housing authorities- local such as Wilmington, Newark, Dover) – information on low income housing, first-time homebuyer’s assistance
  • Freedom Center for Independent Living – housing option and resource network in Middletown DE
  • Independent Resources Inc. – nonresidential organization but works to provide resources and make connections so individuals can live their best life

Social and Relationships

  • Camp Fairlee– Programs are available in two age groups: youth, ages 6-21; and adults, age 21 and over. Overnight travel trip participants must be at least 18 years of age.
  • Camp Barnes– through Special Olympics, ages 14 and older, summer program
  • Camp PALS– week long spring/summer camps, ages 18+, locations throughout the country
  • Planned Parenthood – offers disability programs and workshops for caregivers and self-advocates.
  • Special Olympics – provides sports programs at no cost to individuals ages 2 and older (no upper age limit) all throughout the state
  • Best Buddies – friendship program for those with intellectual and developmental disabilities
  • Expanding Options: Is a parent led non-profit organization that was founded to help create social opportunities for their adult children on the Autism Spectrum
  • Federal Park Pass is a free, lifetime pass available to United States citizens or permanent residents, regardless of age, that have a permanent disability that can be used at over 2,000 Federal recreation sites across the nation, including National Parks, National Wildlife Refuges, and many National Forest lands.
  • Totally Awesome Players – theater group in Wilmington
  • Night to Shine – fun prom-like night out yearly, locations throughout the state
  • Mary Campbell Center– adult programming, events, summer camps etc.
  • Healthier Together with Friends- social program through the Journey church in Newark, Email Bonnie at bonniewagner@yourjourney.tv

Financial and Legal Planning

  • Explore SSDI
  • 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
  • Special Needs Trusts – are designed to provide funds for someone with a disability, while preserving the person’s eligibility for important government benefits
  • Miller Trust– allow individuals to receive Medicaid benefits for long term care services, like nursing home care, if their incomes are above the Medicaid eligibility limit
  • Community Legal Aid Society– provides free legal services to people with disabilities throughout the state
  • Guardianship and Alternatives – understanding all options and making the best decision for your situation in particular (contact us if you’d like an attorney recommendation at info@dsadelaware.org)
  • Help through Delaware CARE Plan – in developing a personalized care plan and establishing a special needs trust – without making him or her ineligible for crucial government benefits, like Medicaid and Supplemental Security Income

Transportation

  • Para Transit: application and an interview through DELDOT – provides transportation for individuals who qualify to work and activities
  • DART
  • Uber/Lyft – riding sharing services that use applications on smartphones to schedule rides

Caregivers

Advocacy

  • National Down Syndrome Advocacy Coalition– sign up for alerts and webinars on legislation pertinent to people with Down syndrome
  • Action Alerts The ARC – you can sign up for action alerts
  • Partners in Policymaking and Junior Partners in Policymaking (Ages 15-22) – provides up-to-date information, education and skill building activities about the legislative process and local, state and national issues that affect individuals with disabilities
  • The A-Team – bi-partisan policy group centered in Delaware that works advocate with and for individuals with disabilities
  • State Council for Persons with Disabilities – mission is to ensure that individuals with disabilities are empowered to become fully integrated within the community, offers fireside chats for self-advocates and families
  • Have you register to vote? Resource guide
    1. Voting Guide
  • Do you know who your state legislator is? Have you met with them before? Find out who they are.
  • Developmental Disability Council – Working to ensure that people with developmental disabilities enjoy the same quality of life as the rest of society

Postsecondary Education

Other Resources

Organizations that offer programming, resources, and more

Day Habilitation Services

Accessed through the Home & Community Based Waiver “What am I going to do during the day?”

  • Employment
  • Community Participation
  • Day Habilitation (through DDDS)
  • Pre-Vocational

Acronym Guide

DDDSDivision of Developmental Disabilities Services
LTSSLong Term Services & Supports
DVRDivision of Vocation Rehabilitation
WIOAWorkforce Innovation and Opportunity Act
DVIDivision for the Visually Impaired
DSAAPDDivision of Services for Aging and Adults with Physical Disabilities
SSDISocial Security Disability Insurance
SSISupplemental Security Income
NAMINational Alliance on Mental Illness
ABLEAchieving a Better Life Experience Act
DMVDelaware Division of Motor Vehicles
DARTDelaware Area Regional Transit
DHSSDelaware Area Regional Transit

Helpful Phone Numbers

Division of Developmental Disabilities Services (DDDS)302-836-2100
Center for Special Health Care Needs302-320-6300
Easterseals Delaware & Maryland’s Eastern Shore302-324-4444
Down Syndrome Association of Delaware302-995-1004
Autism Delaware302-224-6020
UD Cooperative Extension302-831-1239
The Arc of Delaware302-996-9400
Special Olympics302-831-4653
ABLE Accounts- State Treasurer’s Office302-672-6700

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

Last Updated: March 20, 2023