The population of those with developmental disabilities is growing larger, and many in this group will need support of some kind for the rest of their lives. In most cases, this support comes from their parents, and every one of those parents worries about what will happen when they’re no longer able to provide that support.
A 20-year study by the National Council on Severe Autism that concluded in 2020 and followed 187 people with autism in South Carolina revealed that 99% of the test subjects were unable to live independently, and 70% ended up living at home with relatives.
For Sweetwater Spectrum’s founder, Mark Jackson, this quandary presented an especially personal challenge — a challenge that drove him to find a way to create a fulfilling and supportive living environment for those with developmental disabilities. His own son, now 32, had been diagnosed with autism years ago and was soon to age out of his private school. In January 2013, Mark and his partners opened Sweetwater Spectrum. This three-acre farm site supports developmentally disabled individuals in downtown Sonoma to accommodate 16 full-time residents — soon to expand to 20.
In this episode of Absolute Trust Talk, Kirsten Howe speaks with Mark and Sweetwater Spectrum’s Executive Director, Olivia Vain. Olivia’s proven experience with directly managing programs focused on enriching the lives of those with autism was a great complement to Mark’s acquired logistical knowledge, and both offer interesting insight into creating a supportive community for those with developmental disabilities.
Together, we’re going to discuss:
- How Sweetwater Spectrum addresses the individual needs of its residents.
- The ways in which Sweetwater Spectrum differs from other approaches to special needs housing and the benefits those differences provide for the families of its disabled residents.
- The specialized, real-world knowledge that both founder Mark Jackson and Executive Director Olivia Vain have acquired now affords them the ability to consult with other prospective specialized communities so that they don’t encounter the same pitfalls that they did.
And much more.
Unfortunately, parents are unlikely to outlive their children, which leaves a gaping void when even one parent dies. Coupled with the demands of caring for someone with autism full-time, support can often prove to be a lot for some families to handle. We hope this episode will give you insights to support the solution options available.
Big Three from Episode #114:
- Parents aren’t likely to outlive their children, leaving them worried about what will happen to their children when they are no longer around to provide that support. Also, the challenges of caring for someone with developmental disabilities can be enough to tear some families apart. Specialized housing communities for those with such disabilities are often the only viable solution to meeting their long-term needs.
- Sweetwater Spectrum’s founder Mark Jackson’s son, now 32, was diagnosed with autism at a young age. When he was on the verge of aging out of his specialized private school, Mark faced a serious challenge to provide his son with the most supportive and enriching living environment possible. Luckily, fate intervened when Mark met a couple who were in a similar circumstance, and their collective efforts led to the creation of Sweetwater Spectrum. They opened in 2013 to serve the needs of developmentally disabled residents not just through housing but by taking a holistic approach that includes an individualized program and service plan for each resident that’s designed to maximize their capabilities and enrich their lives.
- Compared to other states that feature more modest real estate and construction costs, California represents a daunting challenge for anyone intending to create a specialized facility such as Sweetwater. Just how daunting? Whereas construction costs for an appropriate facility in Ohio might average $200 per square foot, those costs would hover around $500 per square foot in California. Sweetwater itself would cost twice as much to build as it did when its construction began. As a result, Sweetwater’s financial model — where its residents are lessees — is no longer viable in most parts of California. Instead, future facilities in this state will probably have to rely on a “buy-in” model — such as the one Living Unlimited uses — where residents are actually shareholders who fund construction and own a portion of the finished facility. As you’ll hear in this episode, both approaches have advantages and drawbacks.
Time-stamped Show Notes:
0:57 Most parents of developmentally disabled children are challenged with providing support even as they become adults.
1:58 Please join us in welcoming today’s guests, Sweetwater founder Mark Jackson and Executive Director Olivia Vain.
4:07 These surprising statistics will underscore just how prevalent autism has become in today’s population.
5:35 An idyllic, rural location might seem like a great place to construct a specialized housing community such as Sweetwater, but it’s challenging to find staff in those locations.
6:52 Here are some of the amenities that Sweetwater offers to enrich the lives of its residents.
8:16 Next, Mark shares how he organized the Sweetwater nonprofit for maximum efficiency.
10:47 Sweetwater provides residents with individual support services that range from medication management to food shopping, meal plans, and more.
12:38 Sweetwater strongly emphasizes enriching its residents’ lives beyond basic needs to help ensure they live a full life. These items include physical activities, art, volunteering, etc.
13:41 Next, Mark and Olivia discuss how the nonprofit acquires funding to support facility operations.
16:39 Here’s how Sweetwater Spectrum’s financial model differs from that of Living Unlimited — another specialized housing community.
17:57 As a nonprofit, there was no guarantee a child would live at Sweetwater even if a family donated, which can be a challenge.
20:24 California’s skyrocketing real estate costs mean that future specialized housing community projects will probably have to rely on the “buy-in” model to have the funds available to build.
22:28 Mark and Olivia are now available as consultants to anyone wishing to create a community similar to Sweetwater.
25:20 The needs of Mark’s and Olivia’s consulting clients change as their projects develop, but it’s usually years in the making, helping clients tackle one process at a time.
28:16 Experience is a great teacher, and one of the great lessons Mark and Olivia have learned is don’t forget the service side of things – where your services are coming from. If you can’t get the staff, your facility will suffer.
31:15 Creating a community like Sweetwater Spectrum is no sideline undertaking. This is a full-time commitment for the people building it.
33:12 Q&A: Wondering how Sweetwater secured its initial funding? Tune in here to find out.
35:14 Q&A: Do families have to arrange for the support staff for their children, or does Sweetwater arrange that?
37:11 Q&A: What do Mark and Olivia think of group homes, and how do they differ from facilities like Sweetwater?
41:40 Based on another audience question, in Olivia’s and Mark’s estimation, here’s how California fares compared to other states where regulations and support services are concerned.
Want to donate to Sweetwater Spectrum, start your own assistive living community, or find out more? Get in touch with Olivia:
369 Fifth Street West
Sonoma, CA 95476
Resources/Links Mentioned in this Episode:
- Sweetwater Spectrum’s Replication Starter Toolkit is available at: https://sweetwaterspectrum.org/creating-housing#toolkit.
- Absolute Trust Talk Episode 111: How Does the Special Olympics Change Lives Outside of Sports?
- Absolute Trust Talk Episode 110: Free and Appropriate Public Education: How Do I Get One for My Special Needs Child?
- Absolute Trust Talk Episode 099: A Creative Solution to the Special Needs Housing Challenge
- Absolute Trust Talk Episode 095: Special Needs Care Planning: It’s About More Than Just Legal Documents
- Absolute Trust Talk Episode 041: Special Needs Trusts: Don’t Let an Inheritance Blow Up Your Government Benefits
- Absolute Trust Talk Episode 016: Behind the Scenes of Financial Planning for a Family With Special Needs
- Absolute Trust Talk Episode 010: Thinking Outside the Family – Special Needs Trusts & Professional Fiduciaries
- Absolute Trust Talk Episode 008: Financial Planning for Families with Special Needs Individuals
- We’re pleased to provide you with a library of e-books to address common estate planning questions and concerns in practical, easy-to-understand language. https://AbsoluteTrustCounsel.com/Resources/.
- ASK KIRSTEN: If you’d like Kirsten Howe to answer your question on the air, please email her at Info@AbsoluteTrustCounsel.com.
[Ad] Are you a resident of Walnut Creek or the greater East Bay needing help with your estate plan? At Absolute Trust Counsel, your family’s safety is our number one priority. We understand how complicated it can be to know if you’re making the right legacy planning decisions, which is why we’re here to make things easier. Schedule a free discovery call, and let’s talk about how we can help build the right plan for you and your family.