Disease, Disorders, Medical Disciplines

DOWN SYNDROME-AUTISM CONNECTION

Providing education and support to those affected by co-occurring Down syndrome and autism spectrum disorder (DS-ASD)

Haverhill, MA

Mission

Our mission is to provide specialized outreach through family support and education to increase awareness of the unique challenges caused by co-occurring Down syndrome and Autism. Our vision is to empower families, teachers and healthcare providers to maximize the full potential and care of individuals with DS-ASD.

Ruling Year

2012

Executive Director

Charlotte Gray

Main Address

20 Crowell St

Haverhill, MA 01830 USA

Keywords

Down syndrome, autism, dual diagnosis, co-occurring, comorbid, autism spectrum disorder

EIN

45-3674377

 Number

0662826952

Cause Area (NTEE Code)

Down's Syndrome (G25)

IRS Filing Requirement

This organization is required to file an IRS Form 990-N.

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Programs + Results

What we aim to solve

CHILDREN AND ADULTS living with DS-ASD are an under-served and often misunderstood population. PARENTS often know in their hearts that something is amiss. They may feel alone and overwhelmed as they observe other children with Down syndrome growing and developing according to expectations while their child exhibits behaviors more typically associated with autism. EDUCATORS may become overwhelmed without the tools and resources they need to ensure the success of their students with DS-ASD. HEALTHCARE PROVIDERS may be reluctant to suggest a second diagnosis or may even be unaware that the two conditions can co-occur.  If diagnosis is delayed, children may miss out on proven educational strategies such as early intervention and supplemental therapies. We aim to dispel misconceptions by working collaboratively to find real solutions to everyday challenges. We want every person caring for a child or adult with DS-ASD to know that they are not alone. There is help and there is hope!

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Information and Referral

Local and Long Distance Support

Annual Convention

Virtual Support Group and Monthly Online Chats

"DS-ASD 101" Educational Presentation

Where we work

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

Down syndrome and autism are both equal opportunity conditions– meaning that anyone, anywhere, regardless of race, creed or socio-economic status, can have a child with either condition. It is believed that up to 18% of individuals with Down syndrome may also have autism spectrum disorder. Both Down syndrome and autism can be challenging disabilities separately, without the combination, however when combined the challenges are multiplied and can be quite complex. Many parents have expressed that once their child received the additional diagnosis of autism, it became by far the most important issue.  A lot of parents and professionals will tell you that the autism almost always "trumps" the Down syndrome, with oftentimes extremely problematic behaviors, educational challenges and complex health conditions being the main issues in their lives.

Our goals include: helping families and professionals to find the resources needed to seek an evaluation and diagnosis of autism; bringing families living in dark isolation due to their child's exceptional issues into the warmth and light of an understanding and caring community; helping families receive needed resources that are tailored to persons with autism; explaining why a child or adult with Down syndrome and autism develops and acts differently than a person with Down syndrome alone; helping parents, teachers, healthcare providers and extended family members to better understand, support and guide the child or adult with DS-ASD in their lives or in their professional practices. Our desire is for all involved to experience less stress and loneliness and instead discover the joys of fellowship and greater knowledge about the unique issues surrounding DS-ASD.

Our strategies for meeting our goals are as follows: 1. Provide up-to-date information and resources to all affected by DS-ASD using a variety of platforms in order to reach as many people as possible; 2. Provide educational opportunities through our partnership with the National Down Syndrome Congress Annual Convention (over 3,000 in attendance), as well as through our DS-ASD 101 presentations which can be brought potentially to all regions of the country; and 3. Provide a compassionate, knowledgeable community for those affected by DS-ASD.

If you are a parent wondering if your child (or adult child) may be affected by autism spectrum disorder, we want you to know that you are not alone. Whether your child actually has a co-occurring diagnosis or not, we hope that you will find our organization of great value as you search for answers and support.  If you are a professional wanting to learn more, we are here for you, too.

The Connection's staff, Board and volunteers stand ready to provide support, information and resources to all who need it through a variety of platforms. We offer emotional support and educational programs, as well as electronic and printed resources. Our small but mighty organization serves as a vital lifeline to many people living in the margins of our society.

We conduct anonymous satisfaction surveys and we compile anecdotal feedback regarding the quality of our programs. We request anonymous written evaluations following workshops and educational presentations. As long as we continue to hear that families who were once desperately isolated find our organization and suddenly no longer feel all alone, we know we are meeting our mission.

The Connection has grown from a tiny collaborative project in Denver to the only national nonprofit and worldwide resource regarding DS-ASD issues. We will continue to strive to discover new families and professionals who need our programs and the kinship only we are able to provide.

External Reviews

Financials

DOWN SYNDROME-AUTISM CONNECTION

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Operations

The people, governance practices, and partners that make the organization tick.

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Board Leadership Practices

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SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable