Hidden Gems: Meet Kellie Perez-Tuchowski of Down Syndrome Association of Orange County

Today we’d like to introduce you to Kellie Perez-Tuchowski.

Hi Kellie, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
I’m a wife and mother of two, and I am the Executive Director at the Down Syndrome Association of Orange County (DSAOC). I’ve been with DSAOC for 15 years. Before DSAOC, I was in Executive leadership with Marriott International’s Western Regional Sales, but the job I most loved with Marriott was as a special projects director for a program called ‘Pathways to Independence’.

Our focus was to work with community organizations to find groups of people who had obstacles to employment, put them through Marriott specific job training, and then would find them meaningful employment within Marriott. Through that program, I had the opportunity to work with the Welfare to Work program, we employed homeless Vets through the U.S. Veterans initiative, and then we found great success working with those with disabilities, primarily visual impairments. I was able to work with community groups like the Braille Institute, Dayle McIntosh Center, Freedom Scientific and other companies to ensure our workplace was set up with whatever accommodations were needed for our diverse workforce. I learned so much and found motivation and inspiration through that program and its participants that got me excited on the possibilities for my daughter’s future. I have a 28-year-old daughter with Down syndrome.

While working for Marriott, I started finding ways to support the Down Syndrome Association as a sponsor, and I was also able to work more directly with DSAOC as one of 2 founding parents for what has become DSAOC’s most popular teen/adult annual dance, the Red Carpet Ball. Fast forward a couple of years of supporting the organization as a parent volunteer, and I found myself being asked if I would like to become employed with them as their first-ever Director of Development. I loved my work at Marriott, but this job at DSAOC would put me on the front line of things that could positively enhance my daughter’s life. So, in January of 2006, after 14 wonderful years with Marriott International, I started my journey with DSAOC, starting out as their Director of Development and eventually becoming the Executive Director.

Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Smooth roads can be nice at times, but it’s the struggles we face along that road that allow us to see our strengths and that provide the best lessons to learn from. For me personally, it was moving from a for-profit to a nonprofit. One minute you are feature/benefit selling the great products and experiences that Marriott provides, and then you find yourself asking people to support a nonprofit organization that provides programs, resources and support for those with Down syndrome and their families. Then, you encounter a donor that says the reason our Mission will never make the ‘big bucks’ is because we aren’t looking for a cure, and we aren’t trying to eradicate something. Then it hit me that our largest obstacle, and what we needed to find a ‘cure’ for, were people’s perceptions. We need to educate and create awareness to change perceptions about those with disabilities so they can see the person first, their skills, talents and value. That experience was the catalyst for the creation of DSAOC’s tag-line, “Changing Perceptions, Changing Lives”.

Other struggles can present themselves when you are working hard to meet the needs of a diverse community and making sure that you take into account cultural views and language barriers. Of course, like most other nonprofits and businesses, we are currently facing struggles due to the pandemic. How do we stay connected with our constituency and engage with them to deliver our meaningful programs and services and how do we fundraise when we can’t hold events in person? It’s been challenging, but we’ve been able to make things happen that have increased our program participant numbers and our overall reach. This is where technology is truly a wonderful thing when it’s all working efficiently for everyone. We are moving into 2021 about $80k under budget and with a lot of unknowns but will continue to think of ways to accomplish our goals and move our Mission forward. With the small, dedicated, and creative team that we have, I’m sure we will face all the struggles with optimism, flexibility, ideas and solutions, as well as compassion and hope.

We’d love to hear more about your organization.
The Down Syndrome Association of Orange County (DSAOC) is the original Down syndrome organization for greater Orange County – serving families and our community since 1978. DSAOC was founded by a small group of dedicated parents who were concerned about the lack of information and support for new parents after having a baby with Down syndrome. Some were even told to institutionalize their baby and walk away. Our Founders said NO, and they took their babies home, loved them, introduced them to their family, and then worked hard to integrate them into their community. Then, in 1978 they founded P.R.O.U.D (Parents Regional Outreach for Understanding Down syndrome), and by 1980 the organization was an official 501 (c) 3 non-profit. The organization has evolved over its 42+ years, including the name change to Down Syndrome Association of Orange County in 2000, to better align itself with other Down syndrome support organizations throughout the country. DSAOC provides life-long programs, resources and services to individuals with Down syndrome and their families, supports the community by providing informational seminars, supports students by offering opportunities for internships, volunteer hours, and Capstone projects mostly relating to therapeutic and medical/genetic focuses and has specific programs for siblings.

DSAOC’s Mission is to create a place for connection, information and hope for people with Down syndrome and their families throughout greater Orange County, to promote Down syndrome awareness through community outreach, and to offer programs, services and support that aim to empower individuals with Down syndrome to reach their full potential. DSAOC is very proud of our legacy, and we work hard every day remembering the challenges our founders faced during a time when there was little to no value placed on the lives of babies born with Down syndrome. We are also proud of the many awards we have won over the years from the National Down Syndrome Society, National Down Syndrome Congress, Children & Families Commission of Orange County and Regional Center of Orange County. Our teen/adult programs have been recognized for their focus on social, mental and physical wellness, which are key areas that individuals with Down syndrome need support with. This year, we are most proud of our transition and perseverance through the pandemic. We quickly adapted to a new reality when everything changed in March, offering virtual programs for our teens & adults with Down syndrome, Parent Support groups in both English and Spanish, Seminars, and online events so that our community and families still had opportunities for involvement and connection with others, and our kids would still be continuing their personal growths.

We were even able to host a socially distanced, modified for safety, golf tournament a few months ago where we had nearly 200 golfers come out to support our organization. Families from all over California and from other states started emailing us and registering for programs as word of our high quality, online programs spread through social media this year. What sets us apart from other organizations is our long-standing presence in our community, our knowledge, desire and ability to quickly adapt to situations and diverse needs, with the help of a great Board, staff and an Executive Director who is passionate and treats her position as so much more than just a job. We also have a very supportive community who has been coming to our center for years, and everyone views each other as family.

DSAOC has a great reputation for being available to families and the community, being a great model for collaboration with other organizations, and being a good-standing, transparent non-profit. The Down Syndrome Association of Orange County (DSAOC) recognizes that children, teens and adults with Down syndrome can have a myriad of health issues. To support our families with additional healthcare options that are Down syndrome specific, we created an alliance with CHOC Children’s Hospital, and in October of 2009 the CHOC Children’s Down Syndrome Clinic was created. The clinic takes care of 100’s of children annually with regular check-ups as well as providing care and second opinions on more serious health issues. Realizing that many health issues can start after adolescents and in early adult years, DSAOC used its connection to UC Irvine Healthcare to support the opening of an Adult Down Syndrome Clinic at the UC Irvine Family Health Center in Santa Ana, CA. DSAOC focuses so heavily on healthcare for our community because we know that individuals with Down syndrome cannot reach their full potential if they aren’t as healthy as they can be.

DSAOC holds nine weekly programs. On Tuesdays, we have a dance class that focuses on steps to line-dancing and teaches popular dances so our kids can actively participate at weddings and other dances in the community. We also have a Book Club and a Drama Therapy program. On Wednesdays, we have a Hula dance program where our kids can be ready to go to the islands already knowing many of the popular dances, like the Hukilau. We also have Yoga and Taekwondo. On Thursdays, we have a Fitness & Cardio class, a Clogging dance class (yes, Clogging. Great for teaching balance and timing), and also an improv class called Lights, Camera Action. Most of our programs are open for new participants, so if you are interested in signing up your child with Down syndrome for some award-winning programs, DSAOC is the way to go. Our programs run monthly, and some are between 4 and 8 weeks long. These programs cost between $40-$80 for the entire session (roughly $10 per class), and you can sign up at https://give.classy.com/DSAOCprograms. Feel free to send us an email for more information about our organization or programs at [email protected].

Where do you see things going in the next 5-10 years?
I think non-profits will need to continue to think outside the box. Most fundraisers are galas or in-person events, and that will be challenging over the next year, possibly longer. For those that offer programs, resources and support like the Down Syndrome Association of OC does, we will need to move forward ensuring we can complete our Mission virtually. Once we can open our Center again, I see in-person programs being limited in numbers, or limited for in-person, and then a hybrid offering online as well. Some may choose to close their actual offices and offer their services online for now, and many may downsize if they haven’t already done so. We can’t use much information from our usual forecasting, we are entering into a new, unusual chapter.

Pricing:

• Weekly program pricing ranges from $40 to $80, roughly $10 per class

Contact Info:

• Email: [email protected]
• Website: www.dsaoc.org
• Instagram: https://www.instagram.com/dsaoc/?hl=en
• Facebook: www.facebook.com/dsaoc
• Youtube: https://www.youtube.com/channel/UCGDW3KzhDd_xK4eTWE1CITA
• Other: https://vimeo.com/user15769580

Image Credits
Babies on couch from DSAOC Circle of Friends Support Group Holiday Party Rivas family at the DSAOC Breakfast with Santa DSAOC program students with UCI Genetic Students visiting our Center A glimpse of our online programs via Zoom After School Social and Speech program at DSAOC DSAOC Yoga with Julie program DSAOC Summer music and movement program DSAOC Taekwondo Program with Johnathan and Amisha Dance floor shot at DSAOC Red Carpet Ball DSAOC family at our New Parent Luncheon DSAOC Summer Art Program DSAOC Summer Basketball Clinic with Hana