Caring for someone with special needs is not only challenging but often isolating as well. The responsibilities that come with this role are emotionally heavy and offer no real “time off,” so caretakers spend a big part of their lives feeling overwhelmed by the pressures of their everyday lives. These responsibilities are usually for the long haul, and a good deal of the strain that comes with being a caretaker for someone with special needs centers on making the proper long-term preparations. Future housing considerations certainly top that list.
When faced with significant challenges, we often research precedent — seeking effective solutions that have been tested and proven by others. But what if no such precedent is available? That’s the situation Susan Riggle, our guest on the newest episode of Absolute Trust Talk, found herself in. The mother of twins — one of whom remains unable to say his own name, ask a question, or tie his shoe — Riggle began her journey to find an appropriate and effective housing solution for her special needs son in response to one very poignant question posed by his twin sister: “What’s going to happen to Tommy when you’re gone?”
Unable to provide an appropriate answer, Susan began researching her options. A state employee at the time, she had plenty of contacts to reach out to, but found that nobody had any real answers. And as it turned out, they still don’t today. So, believing herself to be part of a small and isolated group of caretakers faced with this situation, Susan attended a conference in Los Angeles and found more than 400 people in attendance — all of whom were in search of the solution to this very same problem. The bonds that were forged during that 2013 meeting — and the networking that resulted — gave rise to Living Unlimited. A nonprofit centered on creating solutions for the lack of special needs housing.
As the Co-founder and Vice Chairman of Living Unlimited, Susan has found her journey ever since to be both immensely rewarding and often very demanding. In this episode of Absolute Trust Talk, she’ll recount some of the substantial roadblocks she’s faced, as well as the often-revolutionary approaches that Living Unlimited has created to provide special needs adults with a comfortable and rewarding housing situation that’s capable of extending beyond the lives of their parents.
It’s a very captivating episode — Susan refers to her time at the helm of Living Unlimited as a “labor of love” while at the same time freely admitting that she’s not sure if she would have embarked on her journey had she known just how challenging it would be.
In this episode, we’re going to discuss:
- The evolving challenges that make creative solutions to special needs housing so difficult to achieve
- How Living Unlimited puts its substantial experience to work to create viable special needs housing communities
- The revolutionary approaches that Living Unlimited has created and executed to solve these unique challenges
- How the families of special needs adults participate in the program
- Why Living Unlimited’s approach to special needs housing is not only a more comprehensive solution than other options, but also offers more real-world practicality
If you’re the parent of a special needs child — or are friends or family to someone who is — you likely know all too well about the myriad of difficulties that come with this role. Listen in as Susan provides invaluable insight into how families can solve their special needs housing challenges and explains how this can happen.
Big Three from Episode #099:
- While parents of special needs children have found that coming up with a housing solution that remains viable for the long term usually tops the list of challenges they face, the public sector still hasn’t responded with practical answers to this surprisingly pervasive problem.
- A number of considerations are involved when creating a successful special needs housing community. Some of these might seem obvious, but others would only be anticipated — and addressed — through real-world experience. This is where Living Unlimited really shines — leveraging its substantial practical knowledge to pave the way for viable, thriving special needs housing communities.
- Looking out for the long-term requirements of a special needs adult is a daunting responsibility in its own right, but in addition, parents in this situation often encounter the same career and lifestyle changes as everyone else. This can make their own living requirements fluid. In order to be successful over the long haul, special needs housing communities must be organized to take these potential changes into consideration.
Time-stamped Show Notes:
1:30 Housing is undoubtedly one of the most pervasive questions on the minds of parents with special needs children. Listen in as Kirsten kicks off the show and tells us a little more about why this is the case.
2:57 “What’s going to happen to Tommy when you’re gone?” The need to answer this one very poignant question was the impetus for Susan’s decision to create Living Unlimited.
3:55 Parents of special needs children often feel like they’re members of a very small, isolated group. But that isn’t the case, and it was a huge driving factor in building Living Unlimited
5:10 Working within the system was a key objective for Living Unlimited in its formative years.
5:50 As Susan continues to tell more about the development of Living Unlimited, we hear about one particular Center for Medicare and Medicaid Services (CMS) ruling that required Living Unlimited to change its approach and rendered a year of planning futile. Here’s what happened.
7:12 Next, Susan and Kirsten discuss one of Living Unlimited’s primary special needs housing community models.
8:49 There are some decided advantages to having a large property available for housing. Here is a couple of them.
9:16 Living Unlimited’s newest project in Petaluma takes a new approach. Start listening now for more about what makes it unique.
9:40 Not only does Living Unlimited’s newest project offer comfortable accommodations for special needs adults, but it also offers this very important advantage over its alternatives.
12:53 What are the financial aspects of these projects? Listen here.
13:50 Kirsten provides some legal perspective on this process and what it takes to develop these types of projects. Check it out.
14:55 As part owners of the properties, Living Unlimited acts in a specific capacity in terms of taking care of the properties. Start listening now as Kirsten and Susan discuss running the communities’ day-to-day operations.
16:17 Here are some advantages of the Living Unlimited approach over alternative housing.
16:44 Living Unlimited acts as a conduit for families in the same circumstance to connect. Here’s one very satisfying result.
19:02 Members of each Living Unlimited community who occupy this very important role are thoroughly vetted and hired by an outside agency.
20:39 Here’s the biggest challenge that Living Unlimited currently faces.
22:57 Q&A: It sounds like these properties have to be owned by multiple families. Do you help them with that ownership structure?
23:35 Q&A: What if a family wants to leave or move out of state? Can a family get out of their investment?
24:53 Susan shares some final thoughts about Living Unlimited, the housing problem, and caregiving for those with special needs.
Get in Touch with Susan Riggle
2625 Alcatraz Ave., #335
Berkeley, CA 94705
Resources/Links Mentioned in this Episode:
- Kirsten would love to offer you access to her Special Needs resource page at https://absolutetrustcounsel.com/special-needs-tools/. We’ve collected our top planning information all in one place so our fans can find videos, podcasts, guidebooks, blog posts, a host of information with tips and strategies on implementing, planning, and protecting themselves and their loved ones.
- Reference Guide 5: Special Needs – Letter of Intent: As a parent of a child with special needs, you may want to consider drafting a Letter of Intent as a companion piece to a special needs trust. This document can be critical in ensuring that your trustees and caregivers understand your child’s interests, routines, abilities, and hopes, and wishes for their future and well-being. Follow this link to download our free Letter of Intent tool to help you get started.
- 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 to answer your question on the air, please email her at Info@AbsoluteTrustCounsel.com.
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