I/DD Topics & Trends with Kim Schreiber

Kim Schreiber, CEO & Co-Founder of NeuroNav – The Lens of Neurodiversity: Paving a Path and Plan for Life

Why should every I/DD family have a plan?

Kim: And I guess for some context, our organization NeuroNav really specializes in policies related to self determination or self directed services. So there’s been a big trend towards giving people in the I/DD community who have an existing budget, some control over that and how they use it in flexible ways in the community. And a big part of how as specialists in that policy, we support individuals and exploring this flexibility and choice is through person centered planning. Person centered planning is a process that’s been developed over decades now. The reason why everyone should have a plan, and ideally, a person centered plan, is because person centered practices really put the individual who has a disability at the center of the planning process. It’s really in reaction to possibilities where more of the planning was systems based and around what was available from government benefits, or different kinds of government provided system members. This really flips that planning process away from what exists that you could fit into, and more into who you are and what do you want your life to look like? And how can you then look at the opportunities and options you have to build out different plans for your life. So it’s a really cool principle, and it really empowers individuals with disabilities to kind of take control of their future, to build greater advocacy skills, and to really have services work for them. In addition, it’s also a really great opportunity for what we call the circle of support, the people who are involved in that individual’s life, to be a part of the planning process and all come together. So it’s good for everyone to have a plan, because plans are how goals get accomplished, and dreams come true. And so the process that we do this is really looking through how to hear at the center of any planning the voice of the individual who it’s meant to serve.

So self directed? Do I get to choose? Is that what you’re saying?

Kim: Yeah, so it’s pretty awesome. It means that your traditional budget, you could use selected pre-approved providers. But now in self determination or self directed services, you can kind of open Pandora’s box, if you will, of all different providers and services in your area. So maybe it wasn’t possible to use some of your funds from the Regional Center for certain activities, or certain groups in your community; like the YMCA or different clubs or Uber instead of peer transport different things that you would typically need to have a vendored provider for. Now it really changes the possibility of what you can spend that really supports you in being your full self in your community.

When should I start planning?

Kim: We really encourage planning earlier rather than later. There are some pretty big transition moments. I’ll share a little bit more I think later about how I got into the space but one of the big push drivers for me was my little brother, Steven, is autistic and when he was getting close to age 22, that’s called the service cliff, and an age that the education system being the main integrator of your support shifts more to a patchwork group of providers that the government supports. And so that experience is really hard for my brother, and really encouraged me to want to explore supporting adults particularly, with navigating services and creating custom plans that work for them. So I think that there’s a few kinds of core time periods, but a big one is around age 14, when you begin having conversations around IEPs, and individualized education plans. Are you going to be seeking a diploma, or a certificate of completion? And how can having the right support with you at that inflection point really help you to pursue the highest education that’s possible for you. So I would really start planning for services and support around that inflection point, and then way ahead of age 22, where there’s a pretty big shift in how your funding and services are integrated.

So if I’m 40, is it too late for me?

Kim: It’s never too late. In fact, if you’re 40, and you have something that you want to change, or an ambition or a dream, or if there’s anything that you’d like different about your life or services, this is a great structure of thinking through what has been working. What hasn’t been working, what’s important to you, and what’s important for you from a safety perspective, and kind of how to balance and think through the pros and cons and find services that can help you achieve different goals. So it’s never too late to start, and never never too early.

So if I was to come to NeuroNav, what services do you provide? How does this work?

Kim: Yeah, so happy to say that our person centered plans are fully funded by the Regional Center system. So we can get started on creating a person centered plan, and it is with the intention of trying the self determination, self directed service model. So we would kind of go through the pros and cons and what that process looks like to get started. And then on the other side, once you enter the new policy, and your services are more defined by you, we really partner with you in a role called an independent facilitator. We call ourselves navigators. But a navigator will work with you to find resources, find any staff that you want, as a part of your plan. We will update your plan, and really hear your voice at the center of that and then work to implement that in your community.

What do you find in the way of options? I know this movement towards self directed or self determination is intended to create options, but in terms of the options that are out there? What’s your experience?

Kim: There’s all new types of services coming online that are really meant to kind of cater to an individual. So it really depends on the person. For instance, one person we’re working with is on adaptive ski lessons, because they’re really passionate about spending time in the mountains, but really haven’t had that opportunity before. Other common goals are, can I find a girlfriend? And I’d like to start a band. And so you can really start integrating music lessons and job coaching for structuring your own small business in the music space, or even relationship counseling. So we’re really getting to explore a large amount of new services that really help people meet their goals. And I think the sky’s the limit. We chose working within this policy because we think that choice and independence and inclusion are central to living the life that you want in your community. And we’re really excited about the innovative possibilities that each of  the individuals we work with kind of inspire and we work together in creating that.

With your experience with your brother, how have you found society treats individuals with intellectual and developmental disabilities?

Kim: That’s a great and tough question. I think that society has a long way to go on to not just be inclusive, but create a sense of belonging for people who are different, who think differently, who are neurodiverse. And I spent some time preparing some of my thoughts and what I would share with others about that topic and I just think that it’s in the small acts of getting over stigma or judgment or fear around different behaviors and how to connect with one another, and being really open to sharing life with people who are neuro diverse. So I think some of it starts with just understanding what neurodiversity is, and that we all have different brains. And that affects how we see the world and in good and bad ways. And everyone can show up with those differences. So for instance, on our team, we really live our mission within our teams, as well as creating inclusive spaces, and hiring for neurodiversity. And each of our team members goes through the person centered planning process with each other. So we cover areas of how we can support each other in the workplace and as colleagues. And it’s a great way to get to know each other. And it’s also a way to normalize asking for different types of help or different ways of working, that I think helps us understand how we can be even more inclusive and create a sense of belonging in our work culture, but also for all the people that we work with and support. So it’s a tough question. I think that I’ve learned a lot from my brother, who is very philosophical and reflective. And I think that there’s a lot of opportunities, and it’s really reaching out to the person next to you not being afraid of differences and integrating that in different aspects of your life.

So what would you suggest, in a way of encouraging society? Because, you know, ideally, we all want to be included, and we want to be connected, and we want to feel like we’re part of something. Thoughts there?

Kim: I think one is just acknowledging it, you know, I definitely sense a difference. And people who have first hand experience as you’re either neurodivergent, or your family member, or you just understand a little bit better of what neurodiversity looks like. So for those folks, I would encourage them to share some context and open that up to people who may not have as close of an experience. And then for people who don’t have that connection, really starting from a basis of understanding what neurodiversity is what neuro divergency means. And being a part of this broader mission of inclusion, I’ve been really encouraged by seeing a lot more moving in racial inclusion. And I think that neuro diversity has also just had a great opportunity to be a part of that story as well, as we look to include others and really understand from their lived experience on what it’s like to feel isolated or feel like you have to be in a disability specific setting to live. I would what we hope to do when we work with our clients in planning is make their community way more accessible for them by thinking of unique and really custom ways that they can go out and do the things that they love with the people that they’re just meeting for the first time or that they’ve known for a long time.

How does one build community?

Kim: I think one builds community in shockingly simple ways, like opening up your doors, having conversation, saying hello, and making eye contact when you pass a neighbor on the street, but also getting involved in local opportunities. For me, I’m a big rock climber, and I love climbing. And I just recently connected with an adaptive sports group. Because I’d love to host a neurodiversity climbing night once a week to help people who are neurodivergent experienced, like strength through climbing, if that’s something that they’re interested in. So I think it’s finding these opportunities to create spaces that allow people to show up as who they are, and their full self without feeling judged or awkward or just understanding that if someone is experiencing stimming or some of the physical aspects might look different or sound different. That is a point to be curious, and not judgmental or afraid. And I think that’s one of the big things  we have to get.

What does NeuroNav do for the community? I mean, obviously, you’re focused on helping individuals and families, but is there anything there that you can share?

Kim: Yeah, I think one of the unfortunate realities is understanding how government funding and different services work. It’s pretty complex, and so I know for myself, as I was trying to advocate alongside my brother, I had to become an expert in it to really even start to make change and work alongside him. So our hope is that not everyone needs to be an expert in how services are funded, or what options you have. But NeuroNav is an accessible resource that’s intentionally building plain language materials and really making it a simple phone call with a human to know what your options are, and what that support can look like. Instead of the somewhat confusing bureaucracy that people at times experience. So simplifying it and building plans and really being a partner in the process.

Yeah, it certainly can be daunting. And of course, it even changes over time. But whether it’s all those three and four letters that they throw at you. Like, “That’s covered by SSI. And what about IHSS? And well, the Regional Center should be able to cover that as a funder of last resort.” How do you stay current on that?

Kim: We pursue every advanced training that we can, and now we ourselves have become expert trainers. So we started by learning from experts like you, Dana, which I greatly appreciate your early influence. And asking a lot of questions and recording those answers. So our team of navigators, we go through training from the learning community, and Helen Sanderson associates, these groups that teach the best practices of person centered thinking and planning. And then we also deeply have studied and know the policies around the Lanterman Act and self determination in not just California, but in many other states. So we build that expertise, and we partner with advisors and experts. And so our navigators all go through a pretty robust training cycle, and we’re always looking for new ways to learn. And so we’re basically making it so that as you work with a navigator, you don’t have to become that full expert, and memorize these laws, and we can kind of interpret that for you.

Sounds like you have to really get to know people. Do you do that through person centered planning?

Kim: Yeah, it’s a pretty awesome process. As a sibling, I learned more about it as I was exploring opportunities to innovate in the space and help with services and adulthood. And it was a pretty big philosophical shift for me in some ways, of just learning some of these principles and practices to really assess my own involvement and what I’m sharing when I’m sharing and always check in with my brother first and ask those questions and not just include him, but follow his lead. As a big sister, that can be a little difficult. But learning these different practices and principles has deeply changed the way that we react and relate to each other. And I can see how it deeply changes the way that decisions are made, and ideas come up, and strengths are talked about, instead of consistent discussion of weaknesses or challenges. It’s how to plan around those challenges instead, and how to boost someone’s strengths. It’s been a really incredible journey for me. And I’m really excited to get to share what that means and what that looks like with many more.

How did you get to where you are now with NeuroNav?

Kim: That journey was pretty fun for us. So I had worked in social enterprise before helping scale a mission oriented company across Sub Saharan Africa, in a very different field and supporting people getting electricity for the first time and clean energy. And so my passion has always been in mission oriented companies that can really make a huge difference. And as my little brother was experiencing such challenges in early adulthood, I just felt kind of cold and called towards focusing on something so close to home. I actually went to Stanford for my Master’s in Business Administration and spent the two years there, really focused on this industry and where the opportunities are to  help shape Disability Services. A team of a dozen of us or so met in our Stanford program, and we call ourselves neurodiversity nerds. We really got to know and listen to the community, we interviewed over 300 people, we road tripped across the US, visited eight different states and so many different models. And that’s how Dana and I met. It was a phone call one day and I said, “I hear you, you have a lot of knowledge for me.” And so it was seeing a lot of the pain points and challenges, and one of the big ones is housing. So I’m still very passionate with housing, I’m on the board for L’Arche in the Bay Area.

There’s a lot of different pain points out there, but a lot of wonderful people working in the space and are really encouraging. And one of the things that I just got so excited about in understanding the policy change for greater self direction was just how much we can innovate within that, and how much we can share each other’s learnings and knowledge about, “oh, I’m trying something really creative and new in Sacramento. And you have similar like goals and strengths in this other part of the state.” So just for what we’re doing, we’re kind of trying to collect all those insights and share with the broader community what’s possible, and what happens when you kind of take away a lot of those guardrails around what you can and can’t do with support. So we founded NeuroNav in COVID-19, at the end of my master’s program, with incredible female co-founders, and our team is just amazing. And so we’re just so excited to be able to share this and open up that option opportunity across the state.

Can you define what the term, I/DD is?

Dana: I’m not sure that I’ve seen a textbook definition, but it’s a very broad umbrella term that includes people with intellectual or developmental disabilities. Often when you get inside of those categories, people’s throw around diagnoses. But in this, it could be autism, and there’s a whole range or it could be intellectual disability. Down syndrome, on and on and on. But I think that coming at it from the other side is really where we’re at. It’s not the absence of strengths, but rather, what are people’s strengths. And they’re different. So maybe the neurodiversity term comes at it from a different angle, and I love the implications.

Kim: Yeah, I love the term. And so neurodiversity is fairly new, and it’s a growing movement and term and there’s different kinds of sub terms within the movement. But neurodiversity as a term was first coined by an Australian sociologist, Judy Singer in the 90s. And it’s really taking a look at how biodiversity exists in the world. And that, there’s so much richness in the difference in our natural environment. And so neurodiversity really looks at how our brains and our brain chemistry can be different. So it’s a rather inclusive term of many different types of neurodiversity, so many different types of brain differences. It could include ADHD, autism, and developmental disabilities. And really even bipolar disorder or different things that are classified in different terms. It’s really looking at how we’re all somewhere under the umbrella of diverse neuro reality, and  taking away some of the definitions that you have to fit within an atypical stance, with how your brain works in the world.

Do you have any specific suggestions for a nonverbal individual What is L’Arche? I heard you referenced it earlier that you are participating in that.

Kim: L’Arche is an organization that was founded in the 60s. And it’s a faith based inclusive housing model. So it’s actually global, they have 180 communities in about 50 or so countries. And so their model is for people with and without disabilities living together in a really supportive and inclusive way. So I had the privilege to live in four different large homes, in my learning journey, and I found it to be an incredibly beautiful culture and  in a way in which people’s strengths are really honored and included. So that inspired a lot of what we want to create and how, and also something that I want to help build here in the Bay Area as they get started.

Where did you get your training for the PCP or person centered planning process?

Kim: I’ve done a number of different training sessions, I would say it’s over probably a dozen or so. So one of the main ones that it has kind of levels of skill development is from a group called the Learning Community, that was built by one of the pioneers of person centered thinking. So the Learning Community really trains people in person centered planning and practices. So that’s one resource, and you can go on their website and find trainers. And then another really great planning resource I found is through Helen Sanderson Associates. They’ve also been doing person centered planning for quite some time based out of the UK, but with a lot of presence in the US and they co-developed their curriculum with a few of the pioneers as well. And so they’re planning a live curriculum that is really great. There’s also the Liberty Plan. So there’s a lot of different resources but it is unfortunately kind of piecemeal but probably the top two that I would recommend looking into are those to the Learning Community and how Helen Anderson Associates.

Dana: And I would add to that, and we’ve trained a number of our staff to kind of train the trainer. But we’ve accessed some training through Parents Helping Parents. And Trudy Gable, herself, has taught a number of seminars, but we’re all moving towards, they call it the final rule. I doubt if it’s going to be the final rule, but it’s kind of the next frontier to roll out person centered training and planning in each and every existing model and Service Group. And so LSA is well along in terms of rolling person centered planning out and each and every one of our homes.

Is NeuroNav vendorized with any Regional Centers yet?

Kim: No, we’re not, because the beauty is that we don’t need to be. Through self determination that policy and program allows for you to access non vendored services. So we considered getting vendorized for person centered planning, but it was official that service code 024 can go towards non vendored providers, so we’re able to do person centered planning, independent facilitation, and all of our services as a non vendored provider, as part of the beauty of getting access to this new service delivery model.

 Can an I/DD person who is completely non verbal, be neurodiverse?

Kim: Yes. Neurodiversity is maybe a way of thinking. There’s no checkbox or requirement, it’s your brain that is different in the way that you think is a little different. But I consider my brain neurodiverse, everyone on this call is all diverse in some ways. So it’s inclusive and it’s talking about that diversity. There is another terminology that’s talking more about where you are on that spectrum. And so, neurotypical is someone who’s brain looks a little closer to everybody else. And there is neuro divergence. If you can identify as neurodivergent, maybe you’re autistic, and that’s what you prefer to identify as. So, it’s really creating language to talk about our differences that isn’t distinctly negative.

Dana: I mean, that’s what I like about it is that it is not judgmental. But so often, the terms that were used for individuals who are part of this population, but I go back to the days when I found out my son was intellectually disabled. And they didn’t tell me that  but they just said he was mentally retarded. And so that’s a deficit, as opposed to a difference. And so I think we’re better off looking at differences and worrying about how we include one another than the other way around. Stop stigmatizing, and that’s where you lead with that.

 Can you talk a little bit about what people can do to help NeuroNav?

Kim: We really just want to get to know you. We just love building this community, this culture of inclusion. Our team is largely virtual now, and I’m hoping one day we have an office and can invite people and host for community events and even have a co-working space for folks to find jobs. So I think I would love to hear from you and how to build that future together and spread the word.

 I’ve seen that there’s been issues with funding at the state level for the rollout of person centered planning.

Dana: So I guess our own experiences is that they have offered several grants, and we were able to apply for and get funding to cover our training expenses. So I guess to the extent that maybe that wasn’t well known, maybe not all the providers were able to participate in that. But our experience has been that we have gotten funding to cover training costs, and also that they’ve moved the timetable out to cut providers a little slack in this COVID-19 period, there were some times where we had other priorities.

Kim: It might be related to self determination. This is like a hot topic for the last couple months. So Dana is speaking to service providers. It’s awesome that there’s so much training happening on the person centered thinking and planning principles and how to implement that as a provider throughout someone’s experience. There was a separate part of entering the new policy that required a person centered plan. And so for people who are in phase folks, I think they’re like pilot folks, but they use different terminology. For people who are lottery in to try self determination early, they had specific funds allocated to them, in addition to their budget to have a plan created. And so there was a big question of as this opens up to everyone who has interest in this policy, will funds be available to pay for person centered plans? And thankfully, yes, it’s official, it’s gone through the consideration and the budget process. And now, anyone who is interested in entering the new policy, may have a person centered plan created that is funded by the Regional Center.

 Is there any program in NeuroNav, where you work with just this population, integrating back into a society that’s kind of divided them throughout the entire process of their high school, and schooling career, and things like that? I know that people have goals and I know that there’s things that you can work with them individually on. But for example, with our Community Integration Training Program at LSA, we focus on their interests, but also help them integrate into the community. Does NeuroNav do things like that?

Kim: 100%, that’s our whole goal. A big part of our planning process is what do you want the community to look like? What’s your ideal week? We go deep, and it’s very collaborative, and the sky’s the limit. And it’s not just providers that are part of it, it’s the full circle of support. So it could be a neighbor, friend, a parent, or anyone that you want. It’s all up to the individual, we often use the term self advocate because that tends to be preferred. The planner, in our terminology, is the person who’s plan it is. And so our principles are to always ask the planner, can we hear from your circle support for ideas and inspiration? So the planning meeting is what we call a party, and we tend to have hour- long parties and we facilitate sessions around what can make your life more meaningful in the community? How can you kind of access new services there? So  it’s really driven by that person’s voice, and then we get really creative. So, okay you want this to happen, what are the steps from A to Z? Let’s talk about that. And then  what services can support you in that? And how do we get those as a part of your Regional Center funding and plan? So yeah, it’s really fun.

This process helps also get past the stigmas of maybe some people that they might not have interacted with before, in terms of including them into the community. Is that part of this party, people that people that they might not have interacted with?

Kim: The party is whoever the planner wants to invite. So we always meet with the planner to understand what they want to change and what’s driving the desire to have a plan. And we scope goals with that planner, and we have so many different tools in our person centered planning tool kit, that we kind of work to select the ones that are most relevant to these goals in the plan itself. And then we have these exercises where we’ll talk about communication charts. Especially with the folks that are non speaking, how do you like to communicate, what does that look like? And we work through that with the planner and the circle support, to create opportunities for that voice. So we have a lot of different resources that we pull on in the planning process. And then once we work with you as navigators, in your self determination, it’s about bringing all these pieces together, continuing to build and develop it. And so there’s many people that we’re crafting and supporting, that can be living on their own.  So living in their own apartment or in their own house and, and feeling like it’s the first time that they can really do that, because they are able to have the types of support that they thought would best suit them in that environment for the first time. Every person that we work with is really different and has really different goals. So it’s very much catered to that. It’s rebuilt with the service that my brother wishes he had and that I wanted him to have and we’re growing every day.

How can a parent access NeuroNav if their child has been denied from the Regional Center?

Kim: We’re always available for consultations, and we often do custom proposals. We’ve helped people with intake week, and we aren’t good at turning people away. So we’ll either be able to help you ourselves, or hopefully link you into some helpful resources. If there are ways to help through the denial process with the regional center, if you do qualify, that’s something that we would love to help with. One of the challenges or goals by creating our service through Medicaid policy and funding was to make it really accessible to all income levels and all backgrounds. So part of that mission of inclusion means that we really wanted to work within the system and the main funding so that this service wouldn’t be purely private pay. I think one of the challenges with that is that a lot of our service is designed to work through a lot of these existing systems so that we can sustain it. But we are always there for a phone call to see how we can help. And our vision for the future is that we’re building a robust set of information about service providers everywhere, and hope that one day that can be accessible to everyone. So in the future, I think we’ll have a lot more opportunities to add value to non regional center clients. But today, we just love to chat and see how we might be of help to you.

Can you talk more about “navigators” and their roles?

Kim: Yeah, and so we’re NueroNav, Neurodiversity Navigation, and our team largely consists of all “navigators.” And these are individuals that have a deep mission commitment to serving and bringing up inclusive activities through the work that we do. So we hire neurodiverse employees, and we’re 30 plus percent neurodivergent ourselves as a company, and we’re always looking to hire and create more inclusive practices within our company and within our hiring practices. And so our navigators come from a lot of different backgrounds; they are social workers, former ABA therapists, and it’s a really rich group of folks that are committed and have shown a history of commitment to serving this population. They go through really rigorous training, to have the expertise to advocate alongside someone in the ebbs and flows of life with all the changes and the differences you might want to make in your service plan over time.

Without shooting yourself in the foot or naming names, are there other organizations or companies that are popping up and trying to do what you do? So do you have allies that are close cousins, or similar to what the services that you’re offering?

Kim: Yeah, we do. And we’re part of an amazing network, it’s called the independent facilitator network. We’re actually one of the founding groups of that, where a lot of professionals from across the state really support each other in supporting the people we work with. So we have a big Slack channel, where we share best practices and tips. If a client isn’t a good fit for us, for an age or geography reason, or any reason, we have a great referral network through the IF network. So there’s some wonderful people, and we actually trained a lot of independent facilitators as well. We have been selected by three different local advisory committees for self determination to create training materials to host orientations in order to coach people. And as part of that we really helped build more capacity for other navigators in the community. So there’s wonderful navigators out there that aren’t necessarily a part of NeuroNav per se, but that we fully support. There’s some groups that have a parallel vision in some ways of creating really accessible information about service providers. The two that I work with and know really closely, are more focused on children. And so we kind of swap tips and share learnings with each other. There’s a group called, Special Acts and Sprout. And so those are two groups that I think are bettering health. Three groups that are really focused in  18 and below and early intervention. And so I think that they have a lot of bright people working to kind of integrate and create better custom services as well. I feel like it’s a really supportive space, and people are very open with their time and sharing ideas.

Since NeuroNav started during the pandemic, what are your current virtual services? And what will your in-person services look like after the pandemic is over?

Kim: I wish I could tell you we knew. So as we started the company, in the virtual world, everyone shifted. I think there are a lot of pros and cons to that. And so we have really  learned a lot and seen how much is possible in virtual means. And so I think what we found also with the folks that we work with is that it tends to be pretty convenient for them to hop in on a zoom call and have their navigator present throughout as needed and enter interactions regularly. However, our navigators across the state, and we’re really looking to keep growing our team with geographic diversity so that we’re able to have the potential to meet with folks in person and in most areas. And that largely is because some of the folks that are really interested in our services, do not want to communicate on Zoom or feel comfortable doing that, especially in the planning process. So we are exploring and starting to open up as things open up safely. So doing in person plans and getting to be a part of our clients lives directly in person. So I think that’s really exciting for us. And we’ll kind of do so as we can.

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