Exclusive Interview with Lisa Holmquist, President of Down Syndrome Connections Nevada

 

Founded in 2022, Down Syndrome Connections Nevada has quickly established itself as a leading resource for people with Down syndrome and their families living in, and moving to, the Silver State.

Recently, GLOBAL Vice President – Strategic Alliances, David Tolleson, met with Lisa Holmquist, President of Down Syndrome Connections Nevada (DSCNV), to learn more about this growing organization and its positive impact locally and throughout the western U.S.

DAVID: Thank you for joining us today, Lisa! Will you please start by sharing a bit about yourself and what led you to found Down Syndrome Connections Nevada?

LISA: My family moved to Nevada in 2013 after a couple of years in Southern California. But before that, I raised my family, including my son with Down syndrome, in Minnesota. He was born in 1997. I encountered the Down Syndrome Association of Minnesota (DSAMN) right after Peter was born and had a great experience with them.

DAVID: DSAM is a great organization.

Unfortunately, when we moved to Nevada, many of the things I valued about DSAMN I couldn’t find here. There was an organization with some programming, but that didn’t really fit my family’s needs or wants, but we participated because we wanted to be part of the community. Vegas was always supposed to be a temporary stop, which is how most people who move here think.

LISA: We really came to love our new state and new community, but decided that if we were going to stay, we needed an organization that provided some of the services we’d grown used to in Minnesota, such as the education piece and an emphasis on research. We know that the lifespan of people with Down syndrome is increasing and that we’re going to be hit by a tsunami of self-advocates who are going to need to be housed and supported without their parents. It’s going to be dire if we don’t plan correctly for the future now. So that was the impetus.

We were founded in December 2021, when we held our first event. A group of us got together to go bowling and to talk about what our organization would be all about. We started off as Down Syndrome Connections Las Vegas. We quickly incorporated and were certified as a 501(c)(3) non-profit in March 2022, so we’re just beginning our fifth year. We focused on free and low-cost opportunities for the people we serve, but also for our organization, so we were able to do a lot with a little. Despite being so new and having little money, we were able to host our first conference in 2022.

DAVID: We’d love to hear more about your annual conference.

Lisa: It’s a labor of love. It takes about 9 months of planning. We started the conference because one of our founding members was a professor at the University of Nevada – Las Vegas (UNLV) and was so supportive of this concept and bringing it to our community. The first one was at UNLV, the next two at the Medical School, and last year at Faith Lutheran, where we’ll be again this year.

The conference started out with a very medical bent. We targeted healthcare providers as speakers, but also so they could learn about our individuals with Down syndrome, how different they are, and how to help them. It’s evolved into a very comprehensive conference that is a micro version of the National Down Syndrome Congress convention. The format has something for everyone. We have a keynote speaker who talks on a big picture topic, and we have breakout sessions geared to different ages and stages, so everyone has something to attend. It has evolved into a very well-attended event, with people coming from all over the western United States to participate. We wanted it to be non-Nevada specific by design, so that people could fly in and see a show on Friday night, attend the conference on Saturday, and have a nice relaxing Sunday morning before heading home. Our goal is to have attendees leave feeling empowered and knowing that there’s a community here in southern Nevada that’s going to help them figure it out, whatever their needs are.

DAVID: Every community needs something like that.

LISA: I think there are pockets all over the place and people just need to find them. Sometimes, families just don’t know about them. I just talked to a family yesterday who has a 50-year-old with Down syndrome who has lived here his entire life. I’d never met them before. They needed some help because their family situation had changed drastically. They didn’t know about us but, thankfully, found us on the internet.

DAVID: Thank goodness. You were fortunate starting out with DSAMN. We’ve worked with Sarah Curfman and, before her, Kathleen Forney, for years and they’re great. But when my wife and I got the diagnosis on our son, we had to call a friend of a friend of a friend to figure out where to start and how to navigate Katie Beckett and early intervention programs. It’s harder than it needs to be and it’s good to have organizations like yours that can help.

LISA: When people call me and tell me they’re frustrated and concerned with finding the right resources, I tell them it’s okay – it’s my first time, too. I have a 28-year-old son with Down syndrome and every stage of his life I learn new things, for example SSI and employment and Medicaid.

DAVID: DSCNV is moving into new areas. Tell us a bit more about that.

LISA: Well, I’ll start by talking about our board’s recent strategic planning, because we’re looking into the future about what our community is going to need that it might not have after some cuts happen, after education is changed dramatically? So, for us, we’re looking at what we are good at in terms of programming and where are the gaps in the Down syndrome community that will really hurt the most? Where are we going to need to provide direct services? In Nevada we have very limited funds available, especially for populations with higher needs. We have 30-year-olds who are still non-verbal or 15-year-olds who are not completely mobile by themselves and those caregivers are overburdened and there no funds to help. So, we are going to try to fill in the gaps the best we can by writing some grants to provide services to families who are especially hard hit, people whose entire lives are consumed by caring for their child. My son, Peter, has medium needs. He’ll never be a movie star and probably won’t live independently because his skills aren’t at the level where that would be safe, but he can go and do fun things and he does and we’ve got that covered in Vegas. But for those families where the caregivers are older, may have trouble driving, have their own cognitive decline, or are caring for a 50-year-old showing signs of dementia they need help and we want to provide it.

We’ve teamed up with Nevada’s first full-time geneticist to provide help to brand new families to answer questions they may have. We’re working with our local GiGi’s Playhouse to make sure they have help finding the services they need, whether that’s financial, or finding a mom who’s had similar experiences to be a mentor, and to provide a community to ensure everyone feels welcomed in.

DAVID: You recently changed your name from Down Syndrome Connections – Las Vegas, to Down Syndrome Connections Nevada. Why the change and why now?

LISA: It actually originated at a Down Syndrome Affiliates in Action (DSAIA) conference a couple of years ago. I was meeting with some wonderful Down syndrome affiliate leaders from states where their budgets are in the millions of dollars. One of the leaders was with an organization that has a city name rather than a state name, but they serve 27 counties. Their one regret was that they didn’t change to a statewide name early on, before their current name got so much recognition. Also, I’m familiar with the Down Syndrome of Minnesota, which serves a state with a similar population spread to Nevada. In Nevada, 75% of the population lives in Clark County, another 12% lives in the Reno/Tahoe/Carson City area, and the rest of the counties are rural and sparsely populated. That’s similar to Minnesota, where 80% of the population is in the Twin Cities and the remainder spread across the state. So, DSAMN provided a good model. Also, we have an excellent relationship with our sister organization, the Down Syndrome Association of Northern Nevada, in Reno. They are absolutely wonderful and serve their families so well. We have a great, reciprocal relationship. We also want to help families in smaller communities start their own organizations but have our support and be able to come in under our nonprofit umbrella while they’re getting started. Elko, for example, is 5 hours from Reno, 5 hours from Bozeman, MT, where the hospital is, and 8 hours from Las Vegas. We want everyone to have access to support and services. We want to help people make the connections they need.

DAVID: DSCNV is accredited through DSAIA and has earned a Platinum Transparency rating with @CandidDotOrg (formerly Guidestar). Why was it important to you to take the extra steps needed to achieve these milestones?

LISA: There are so many nonprofits in Las Vegas and what sets us apart is our commitment to transparency financially and to the best practices of running an organization that’s going to be asking people for donations. Currently, we are a 100% volunteer-run organization; however, we wanted to set ourselves up with a professional framework from the beginning to accommodate a growing organization that may one day have staff. The DSAIA accreditation process helped us with some things that, frankly, we didn’t even know we needed. With that being said, there are always things to improve, so we work on those.

We’re fortunate to have a thoughtful, deliberative Board, rather than one that automatically says “yes” to everything. For example, we just updated our mission statement and rather than just take the first thing offered, they morphed it into something that’s lovely and completely encapsulates what we do and what we want to accomplish – “Nurturing people with Down syndrome and their families through community and connections.”

DAVID: That speaks well not only of your Board, but of the atmosphere that you have created so that didn’t just take the first one and say, “okay, that’s fine”, then think to themselves, “well, it’s just okay.” They felt secure enough and excited enough about your mission to participate and you came up with something even better than what you proposed initially.

LISA: When I started thinking about starting an organization and the people who would be in it, it was never intended to be just me leading, because I have a life outside of Down syndrome. I’ve intentionally told the Board we need to find a successor sooner rather than later. This isn’t my organization, it’s our organization, so giving my Board the opportunity to lead, rather than be led, has always been on my mind.

DAVID: We are very grateful that DSCNV supports GLOBAL’s research, medical, and advocacy efforts through your Organization Membership. It’s also been our pleasure to support your work through an Education Award. Why is it important to you to support the work that GLOBAL is doing?

LISA: We have always felt that the national organizations do work we can’t and GLOBAL’s work in research is so critical to make that next generation of aging people with Down syndrome and the next generation of babies being born successful, healthy, happy, and more fully included in society. GLOBAL’s outreach, publications, and intentional research happens because people support Global Down Syndrome Foundation. We are thrilled to be part of the GLOBAL Adult Guidelines as an organization. We didn’t have a lot of money when we made a five-year pledge to that project, but guess what? We’ve raised the money, because we knew it was important and we happily give it to help the Adult Guidelines get updated and expanded.

DAVID: And we are very grateful for your support!

LISA: Thank you. You’re welcome!

DAVID: Is there anything else you’d like to share that we haven’t covered?

LISA: Well, I do want to touch on what receiving the GLOBAL Education Award meant to us. We received it for our second annual conference and that money was so helpful! Especially as a newer conference, we knew that finding speakers who are at the top of their field would be difficult. We couldn’t have done that without the GLOBAL Education Award. That early boost really helped our conference start off strong and that continues through today. And, because we were applying for a GLOBAL Award, it really helped us learn how to write grant applications, but to do so with a friendly funder who could provide guidance and feedback. It’s very intentional on GLOBAL’s part about what you ask and how you ask it and has helped us learn and grow as we write other grant proposals. And, I still apply for the GLOBAL Education Award every year.

If I’m no longer doing what I’m doing, the part I’ll miss is speaking to those brand new families, which is my favorite part. I love it! Hearing their questions and their different takes on what they need, seeing the friendships that develop, and watching people grow – even seeing a 50-year-old with Down syndrome learn a new skill and finding pride in doing something they’ve never tried before, these are things that are so small and funders don’t care about it, but I do. That’s why I do what I do every day.

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