#Expert Conversations

Sheaden Nicholau

A smiling woman with light skin and brown hair wearing a burgundy blouse.

WITH is pleased to present Expert Conversations, an ongoing series that features conversations with experts in the fields of healthcare, disability, digital health, and philanthropy.

Today’s Expert Conversation is with Sheraden Nicholau. She is the Regional Manager of Bay Area Office State Council on Developmental Disabilities.

Tell us a little about your background, your work:

Sure! I am the Regional Manager for the CA State Council on Developmental Disabilities (SCDD), covering the Bay Area region. SCDD uses advocacy, capacity-building and systemic change to ensure that Californians with intellectual and developmental disabilities (I/DD) and their families, reflecting the diversity of our great state, have increased supports and resources to:

  • Advocate for civil and service rights to achieve self-determination, integration and inclusion in all areas of community life
  • Obtain competitive, integrated employment
  • Access affordable, accessible, safe, and integrated housing that provides choice and flexibility regarding where and with whom they live, and how they are supported
  • Access health, public safety, and related services that meet their needs and health care choices
  • Obtain inclusive education services throughout the lifespan
  • Access community-based services and public safety services available to the general public/population

If it sounds like quite a span, it is! Additionally, the Bay Area team I have the pleasure to oversee is responsible for the data collection and interviews for the National Core Indicators project, and the Movers Longitudinal Study, for nine counties in the state. They do such incredible work, in partnership with the community.

Previously in my career, I’ve served as an associate executive director for a nonprofit cross-disability service and advocacy organization in the Bay Area. I have a MA and BA in Sociology, focused on social capital and human services. Additionally, as a part of my current role, I have completed two levels of California’s POST Law Enforcement Instructor certification.

What led you to become an advocate for people with disabilities?

I was lucky to have grown up with that social justice lens. I come from a diverse family, and from an even more diverse neighborhood.  Service to others was instilled early on. I got to see first-hand the impact of opportunity and, conversely, the impact of oppression and institutionalized discrimination on people from all walks of life. Racial justice, LGBTQ rights and disability rights, especially how these tie to economic opportunity, really hit home for me as a kid. Into my teenage years, working on a ranch and giving horseback riding lessons to children and young adults with disabilities sealed the deal for me. One opportunity leads to another, and in no time at all I was hooked in serving and working side-by-side with the disability community. One component that struck me then, and stays with me now, is that the disability community is a minority group that includes all other minority groups and is the only minority group that anyone can become a member of at any time in their lives.

What, in your opinion, are the most common misconceptions about the work you do?

Well, we get a fair amount of calls and visitors to our regional office asking if this is where they go for their state disability hearing. And nope, sorry, that’s a department on another floor!

Really, though, a more common misconception is that we, SCDD, only work on policy, or that we only provide technical assistance for people needing assistance.

We do both of those things, in spades. We provide grant and sponsorship funding for promising practices and systems change, regionally and across the state. We also serve in lead and/or individual contributor roles in cross-sector and intra-industry advisory committees, task forces, and collaboratives, effecting change in inclusionary practices and legislation. And training—we offer lots and lots of training to groups large and small, covering a laundry list of topics.

From your perspective, what is the current state of affairs for people with intellectual and developmental disabilities in regard to healthcare? What issue related to healthcare for people with I/DD do you feel needs more attention?

We all have a lot of work to do–and it needs to be done together–to reduce healthcare disparity for people with I/DD and other disabilities. Currently we have a growing population, with an estimated 630k Californians with I/DD alone, and that does take into account the greater population with disabilities. Despite the size of our population, there is relatively insignificant representation when it comes to healthcare policy and disparity-reduction efforts.

Access to high-quality healthcare is a clear issue, especially when including mental health/behavioral healthcare, dental care, reproductive healthcare, etc. Competent care coordination, between healthcare providers, and between healthcare providers and support service providers, in partnership with the patient and their family is important. Building capacity in the current healthcare provider networks to serve individuals with I/DD and other disabilities is important. And making sure that healthcare systems are upholding self-directed, patient-driven care is critical. Approaches such as Supportive Decision Making, and tools and publications such as those from the UCSF Office of Developmental Primary Care are just a couple of examples of how we can collectively ‘move the needle’. Collaboration between public and private systems of care make a difference as well, we need to develop and support those whenever possible.

Despite the challenges, there is a lot of good work being done in California in this area. We need to amplify and scale the progress, and make sure patients and advocates with disabilities have a seat at the table to drive change.

 Who are your most trusted resources when examining disability policies and/or services?

That’s easy— my most trusted resource is our community of Californians with disabilities! Showing up, asking questions, keeping ears open, and answering the phone are such basic actions, and yet doing these consistently and making sure we are hearing and learning from a wide array of our disability community is key. Self-advocates and their family members help direct our focus and guide our state plan. They also partner with us to do the work.

A bit about the CA State Council, itself: The Governor appoints the Council’s 31 members. Some are appointed because they are self-advocates or family advocates, some by virtue of their position in state government, and some as representatives of other organizations involved in the developmental disability services system. Under federal law, self-advocate and family advocate representatives must comprise at least 60 percent of the Council membership.

I’m honored to be able to tap into this vast, experienced network, as well as networks of fellow allies; advocacy groups such as the Statewide Self-Advocacy Network and People First chapters; regional centers; CA state departments; our federal partners, Disability Rights of CA and the University Centers for Excellence in Developmental Disabilities; ILCs; family resource centers; parent training and information centers; community service providers; private sector businesses committed to diversity and inclusion; leaders in the disability justice movement—you get the idea. We have such a rich and diverse community. I learn something new just about every day.

What, in your opinion, are the greatest barriers to a truly inclusive society?

Of all barriers, I’ve seen that attitudinal barriers are the hardest to overcome. It’s attitudinal barriers in that toxic, reciprocal relationship with institutionalized discrimination and ableism that is the most challenging to dismantle. And we know these are what delay access, equity, and opportunity for all Californians with disabilities. These are what depress representation, and muffle voices. We know we can do better. And we need to keep doing better, as we learn more. Inclusion isn’t a destination, it’s an action—one we have to practice each and every day.

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The mission of WITH Foundation is to promote comprehensive and accessible healthcare for adults with developmental disabilities.

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