RESOURCES | Anoushka's Helping Hand

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Local and National Down Syndrome Organizations

Global Down Syndrome Foundation Focus: Research, medical care, advocacy
National Down Syndrome Society (NDSS) Focus: Policy, inclusion, awareness
LuMind IDSC Foundation Focus: Research outreach, diagnostics, education
GiGi’s Playhouse Focus: Free programs & therapeutic support
National Association for Down Syndrome (NADS) Focus: Historical advocacy & family support
National Down Syndrome Congress (NDSC) Focus: Information, support, national convention
Down Syndrome Association of CT (DS-ACT) Focus: Education, Resources, Advocacy
Down Syndrome Affiliates in Action Focus: Affiliate network development, Training, Networking

Public and School-Based Transitional/Life Skills Programs

Connecticut Public Transition Program (PTPs) Overseen by the CT State Department of Education, PTPs serve students ages 18–22, focusing on vocational skills, functional academics, and independent living.

Oakview Transition Program A structured, school-based transition program emphasizing real-world learning, community volunteering, and work-based experiences.

Nonprofit and Vocational Programs

The Kennedy Collective – Partners Program Offers job readiness training, travel training, and life skills development for students and young adults with disabilities.

Benhaven – Career and Transition Services Offers community-based transition support for young adults 18+, including career exploration and self-advocacy training.

Private Transition and Life Skills Programs

Chapel Haven – REACH Program A respected residential and day program in New Haven for adults with developmental disabilities focused on independent living.

Vista Life Innovations Located in Madison, CT, Vista supports young adults and adults with life skills, job coaching, residential services, and social integration.

State Resources and Training

Connecticut State Department of Education – Secondary Transition Resources Provides guidance on transition planning through the IEP, starting at age 14.

SERC – Secondary Transition Services Offers professional development, transition planning resources, and family workshops.

Support & Employment Services in Connecticut

Ability Beyond serves over 3,000 individuals across Connecticut, offering employment training, job programs, and transition support toward meaningful work.

Kuhn Employment Opportunities, a nonprofit agency, helps people with disabilities find and retain employment through job development, training, coaching, and transportation services.

The Arc of Connecticut, local chapters, Goodwill Industries, Mental Health Connecticut, and the Connecticut Institute for the Blind all offer supported employment programs—often free for eligible individuals—to help with assessment, placement, and workplace retention.

The State Department of Administrative Services utilizes contracts with service providers to offer integrated employment opportunities, transitioning from segregated environments toward greater inclusion.

The Job Accommodation Network (JAN) provides free technical assistance and resources to employers, individuals, and service providers on accommodations, entrepreneurship, and ADA compliance

Family Planning

Skye Harbor Financial Erik is an independent financial planner and father to an incredible child with Down Syndrome. Specializes in Special Needs Planning.

MYTHS VS. FACTS ABOUT Down Syndrome

FACT:
While individuals with Down syndrome may share some physical features, they each have unique traits and personalities, just like everyone else.
FACT:
Down syndrome is the most common chromosomal condition, occurring in about 1 in every 700 live births in the U.S.
FACT:
In about 95% of cases, Down syndrome is not inherited but occurs as a random genetic event.
FACT:
With proper medical care, many individuals with Down syndrome live into their 60s and beyond.
FACT:
People with Down syndrome can attend school, learn to read and write, and reach many educational milestones with appropriate support. Numerous individuals with Down Syndrome have graduate from high school, earned college degrees, and even gain masters degrees.
FACT:
Intellectual ability varies among individuals. Many people with Down syndrome have mild to moderate cognitive delays but are capable of meaningful learning and growth, and contribute significantly to society.
FACT:
Individuals with Down syndrome experience a full range of emotions such as joy, frustration, sadness, excitement just like anyone else.
FACT:
Many adults with Down syndrome hold jobs, volunteer, and contribute to their communities in meaningful ways. Many even create their own employment opportunities by starting businesses.
FACT:
Many children with Down syndrome are successfully included in mainstream classrooms with proper accommodations. In fact, statistics have shown that an inclusive education environment is most beneficial for students with AND without disabilities.
FACT:
Some adults with Down syndrome live independently or semi-independently, often with minimal support
FACT:
Down syndrome is a lifelong genetic condition. While it cannot be cured, early intervention and therapies can greatly improve quality of life
FACT:
Families often describe having a child with Down syndrome as a rewarding and enriching experience, filled with love and learning.
FACT:
Many individuals with Down syndrome form meaningful friendships, date, and some even get married.
FACT:
While the risk increases with maternal age, most babies with Down syndrome are born to women under the age of 35, simply because younger women have more babies overall.
FACT:
With the right support and opportunities, many individuals with Down syndrome can lead fulfilling, semi-independent or independent lives.
FACT:
Numerous studies have shown that virtually 100% of people with Down syndrome will have the plaques and tangles in the brain associated with Alzheimer’s disease (e.g. Zigman et al., 1993, 19, 41-70) but not necessarily the actual symptomatic disease. How many people with Down syndrome will develop the symptomatic Alzheimer’s disease needs additional research. One study from 1989 indicates that between 20-55% of people with Down syndrome will develop symptomatic Alzheimer’s disease before the age of 50 (i.e. Australia and New Zealand Journal of Developmental Disabilities, Haveman et al.,15, 241-255).
FACT:
Having and raising a child is challenging in general and this would be significantly so for a person with Down syndrome. Women with Down syndrome can give birth. While men with Down syndrome are generally considered to infertile, it is important to note, there have been a handful of documented instances of men with Down syndrome who have fathered children.
FACT:
People with Down syndrome are capable of feeling pain just like everyone else. However, a study published in 2000 in the medical journal, Lancet, suggests individuals with Down syndrome may express pain more slowly and less precisely than neurotypical individuals. Parents and guardians need to be firm with the medical community and insist that people with Down syndrome be given the same types of pain-control procedures as a typical person, even in the absence of obvious signs of pain.
FACT:
A recent Vanderbilt Kennedy Center study published in the American Association of Intellectual Disabilities indicates that divorce rates are lower in families of children with Down syndrome. The study was one of the largest to date and included 647 families who have children with Down syndrome.
FACT:
There are no studies that support the notion that a child with Down syndrome will have a negative impact on siblings. It has been noted by mental health professionals that siblings of individuals with Down syndrome have increased empathy, tolerance, compassion and awareness.
FACT:
An inability to walk is not a characteristic of Down syndrome. However, getting early physical therapy to ensure proper walking is important and builds the foundation for sports aptitude. Individuals with Down syndrome have a variety of athletic abilities and levels of agility, in the same way that typical people do. Many individuals with Down syndrome participate in their local team sports and in Special Olympics events. Some individuals with Down Syndrome are now completing marathons, triathelons, and other impressive physical feats.
FACT:
Not all people with Down syndrome are overweight. However, there is a relationship between Down syndrome and obesity, although the actual degree of obesity relative to the typical population needs further study. Research suggests that both the thyroid and a lower metabolic rate contribute to people with Down syndrome being overweight. This lower metabolic rate means that children with Down syndrome burn fewer calories overall compared to a typical child and need to need to exercise more to burn off the same number of calories. It is important for everyone to eat right and exercise.
FACT:
The majority of children with Down syndrome can learn to read and write. Research shows that teaching reading to children with disabilities, including those with Down syndrome, is most effective when teachers are well trained, have high expectations of their students, and students’ progress is formally evaluated. More research is needed to determine how to teach children most effectively with Down syndrome to read and write. There are adults with Down Syndrome who are published authors and professional speech writers.

Glossary of Disability-Related Acronyms and Terms
(With a focus on Down Syndrome)

Federal Laws & Education Rights

IDEA — Individuals with Disabilities Education Act: Federal law ensuring special education and related services.
IEP — Individualized Education Program: Customized education plan for a student with a disability.
FAPE — Free Appropriate Public Education: Educational right under IDEA to receive free and suitable education.
LRE — Least Restrictive Environment: Students with disabilities must be educated with peers to the greatest extent possible.
ADA — Americans with Disabilities Act: Prohibits discrimination based on disability in all public areas.
Section 504 — Section 504 of the Rehabilitation Act: Prevents discrimination and ensures accommodations in schools.
ESSA — Every Student Succeeds Act: Governs K-12 public education policy and supports students with disabilities.

Evaluation, Services, & Support

IFSP — Individualized Family Service Plan: Plan for infants/toddlers (birth to 3) receiving early intervention.
BIP — Behavior Intervention Plan: Plan to address behavior issues, often linked to an IEP.
FBA — Functional Behavior Assessment: Evaluation to determine causes of challenging behavior.
PT — Physical Therapy: Supports mobility, strength, and coordination.
OT — Occupational Therapy: Assists with fine motor skills, self-help skills, etc.
SLP — Speech-Language Pathologist / Speech Therapy: Supports communication and feeding skills.
AAC — Augmentative and Alternative Communication: Non-verbal communication methods (e.g., devices, PECS).
PPT— Planning and Placement Team: A group of professionals and the student's parents who work together to make decisions about a student's special education needs and services. PPT meetings are held at least annually, but can be requested at any time.
AT - Assistive Technology: any of a wide range of tools, devices, software, and systems that help individuals with disabilities increase, maintain, or improve their functional capabilities.

Transition & Adulthood

SSI — Supplemental Security Income: Financial assistance for individuals with disabilities.
SSDI — Social Security Disability Insurance: Benefits based on prior work history for individuals with disabilities.
VR — Vocational Rehabilitation: Services to support job training and employment.
TTP — Transition to Postsecondary Program: Specialized programs to support post-secondary education.

Diagnosis & Medical Terms

DS — Down syndrome: A genetic condition caused by an extra chromosome 21.
NIPT — Non-Invasive Prenatal Testing: Screening test for chromosomal conditions, including DS.
OTC — Over-the-Counter: Refers to non-prescription medication; relevant to DS and associated conditions.
ENT — Ear, Nose, and Throat Specialist: Frequently seen by individuals with DS due to related health issues.
G-tube — Gastrostomy Tube: Feeding tube for those with significant feeding challenges.

Inclusive Education & Community Terms

UDL — Universal Design for Learning: Curriculum design to accommodate all learners.
SEL — Social Emotional Learning: Supports self-awareness, empathy, and social skills.
RTI — Response to Intervention: Early intervention model for students struggling academically or behaviorally.
MTSS — Multi-Tiered System of Supports: Framework to support academic and behavioral needs.
ESY — Extended School Year: Special education services provided beyond the regular school year.

Advocay & Organizations

NDSS — National Down Syndrome Society: U.S. advocacy organization for individuals with Down syndrome.
DSDN — Down Syndrome Diagnosis Network: Supports parents receiving a DS diagnosis for their child.
NDSC — National Down Syndrome Congress: Supports advocacy, education, and inclusion.
AAPD — American Association of People with Disabilities: Broad disability rights organization.
DSP — Direct Support Professional: A caregiver who provides support to individuals with disabilities.

LOOKING FOR MORE WAYS TO MAKE A DIFFERENCE?
CONSIDER SUPPORTING THE FOLLOWING BUSINESSES...

Businesses owned by people with disabilities:

RETAIL & APPAREL

John's Crazy Socks – Founded by John Cronin, who has Down syndrome, this popular sock company spreads happiness and advocates for disability employment.
Born to Stand Out Socks – Created by Matthew, a young man with Down syndrome, this sock brand celebrates uniqueness and individuality.
Chelsea Werner Designs – Chelsea, a gymnast with Down syndrome, now designs apparel that promotes inclusion and positivity.

FOOD & BEVERAGE

Collettey's Cookies – Founded by Collette Divitto, who has Down syndrome, this Boston-based cookie business is known for its mission of empowering people with disabilities through employment.
Poppin Joe's Gourmet Kettle Korn – Owned by Joe Steffy, who has Down syndrome and autism, this business offers kettle corn and spreads awareness about ability in entrepreneurship.
Howdy Homemade Ice Cream – Known for employing people with disabilities, it was co-founded with the mission to create job opportunities and serve delicious treats.
Bitty & Beau’s Coffee – Named after the founders’ children with Down syndrome, this coffee shop hires individuals with intellectual and developmental disabilities.
Bee’s Ice Cream (Connecticut-based)
Owned by a young woman with Down syndrome, Bee’s is known in the local community for celebrating inclusion and sweet treats. (No central website; local press coverage available.)
Special Kneads and Treats – A nonprofit bakery in Georgia employing adults with disabilities, offering cakes, cupcakes, and custom desserts.
Sweet Heat Jam Co. – Co-founded by a young man with Down syndrome, Andrew, and his family, this business produces spicy jams and sauces.
Extra Special Teas – A tea house and vocational training space for young adults with developmental disabilities, based in Massachusetts.

HOME & PERSONAL GOODS

Soaps by Zach – Zach, a young man with Down syndrome, makes homemade soaps and promotes kindness with each sale.
Jacob’s Ladder Soaps – A company started by Jacob, who has autism, crafting handmade soaps while raising awareness about autism acceptance.

ART & CREATIVITY

Art by Amy D. – Amy, a woman with Down syndrome, creates original artwork, prints, and greeting cards.
Grace Place Art – Founded by artist Grace Fisher who became quadriplegic due to a rare disease, this nonprofit uses art and music to inspire others with disabilities.

OTHER NOTABLES

Spectrum Designs Foundation – A custom apparel business in New York that employs individuals on the autism spectrum.

NOTABLE INCLUSIVE EMPLOYERS/COMPANIES:

Team Woofgang & Co. in Fairfield, CT. Actively hires people with disabilities and supports them through structured, compassionate vocational programs.
Sweet P Bakery in Norwalk, CT. Not only hires individuals with disabilities, but is built around empowering them through skill-building, meaningful work, and inclusion.
Abilis operates social enterprises like Abilis Café, Courthouse Café, and others across Fairfield County. These businesses provide training and employment opportunities for adults with developmental disabilities, supporting both supported and competitive employment in a real-business context.
Prospector Theater in Ridgefield is a nonprofit movie theater employing around 125 people—approximately 75% identify as having disabilities—from front-line roles to board-level positions.
New Canaan YMCA received the 2024 Employer of the Year Award from STAR Inc. The Y has hired seven individuals with special needs since 2021 through a funded employment initiative.
Beanz & Co. in Avon is a community-mionded cafe that consciously emloys both people with and without disabilities to foster inclusion and bring meaningful emplyment.

Support & Employment Services in CT:

In addition to direct employers, there are several organizations that partner with businesses or provide job support services:

Ability Beyond serves over 3,000 individuals across Connecticut, offering employment training, job programs, and transition support toward meaningful work.
Kuhn Employment Opportunities, a nonprofit agency, helps people with disabilities find and retain employment through job development, training, coaching, and transportation services.
The Arc of Connecticut, local chapters, Goodwill Industries, Mental Health Connecticut, and the Connecticut Institute for the Blind all offer supported employment programs—often free for eligible individuals—to help with assessment, placement, and workplace retention.
The State Department of Administrative Services utilizes contracts with service providers to offer integrated employment opportunities, transitioning from segregated environments toward greater inclusion.
The Job Accommodation Network (JAN) provides free technical assistance and resources to employers, individuals, and service providers on accommodations, entrepreneurship, and ADA compliance.