We talk to DETAC’s self-advocate advisor Nicole Leblanc, about her personal perspective on person-centered thinking and best practices for engaging people with disabilities through a person-centered process, particularly related to employment.
You can also read Nicole’s blog post, “A Self Advocate’s Perspective on a Person-Centered Approach to Employment for People with Disabilities“.
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Presenters
Nicole worked for over eight years at Green Mountain Self-Advocates in Montpelier, Vermont as Advocacy Director supporting her peers with disabilities to feel comfortable talking to their elected officials and as a Project Assistant for the Inclusive Healthcare Partnership, working to help people with disabilities get their healthcare needs met.
She has had internships at the Administration on Intellectual and Developmental Disabilities and Association of University Centers on Disabilities. Since 2011, Nicole has consulted for Self-Advocates Becoming Empowered and the Autistic Self-Advocacy Network. In 2018 Nicole served as the Dr. Ruth Sullivan policy fellow and from 2018 to 2019 she was the Self Advocacy Resource and Technical Assistance Center (SARTAC) fellow at NDRN where she produced “Real Jobs for Real Pay”, a booklet advocating competitive integrated employment. In 2019 Nicole joined HSRI as the Coordinator of the Person-Centered Advisory and Leadership Group (PAL-Group) in the National Center on Advancing Person Centered Practices. Nicole just recently accepted a contract role with Not Dead Yet to educate Maryland and Virginia legislatures on the dangers of physician-assisted suicide laws. In 2020 Nicole created the toolkit called “Why Employment Matters” on talking to families about employment.
She has given talks, webinars and keynotes throughout the country on Autism, the dignity of risk, presumption of competence, Person Centered Planning, healthcare access, the “new normal” after COVID-19, tele-health, Build Back Better, voter access, competitive integrated employment, self-managed services and Home and Community-Based Services (HCBS).
In 2019 Nicole won the David Joyce Advocate of the Year award for outstanding policy advocacy on Capitol Hill and in 2022 she received the Steve Bartlett award that recognizes and honors a person in the private or public sector who demonstrates a strong commitment to using the political system to advance public policy in support of people with disabilities.
She earned a certificate of professional studies from the University of Vermont. In 2018 Nicole was the first self-advocate to complete from the Vermont LEND program.
Her motto is: Control your own destiny or someone else will.
Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice.
Transcript
Announcer: You are listening to the AoD Disability Employment Technical Assistance Center (or DETAC) podcast, where we learn from people who are working to improve competitive, integrated employment and economic outcomes for people with disabilities.
In today’s episode, we talk to DETAC’s self-advocate advisor Nicole Leblanc, about her personal perspective on person-centered thinking and best practices for engaging people with disabilities through a person-centered process, particularly related to employment. This discussion is not intended as policy guidance, but rather to share key insights on the importance of being person-centered from a self-advocate’s perspective.
Donald Taylor: Nicole LeBlanc, please introduce yourself. Tell us about yourself and your experience in the disability field, especially as a person who’s received services to help with job placement.
Nicole LeBlanc: Good morning everyone. My name is Nicole LeBlanc. I live in Silver Spring, Maryland. I’ve worked in the disability field at the state and federal levels for 16 plus years doing policy and advocacy in a variety of capacities. I first started out in the field at Green Mountain Self-Advocates, otherwise known as GMSA, working on a grant around domestic violence and sexual violence to make disability organizations become more trauma sensitive, and domestic and sexual violence programs become more accessible. As time went on, my role expanded to doing legislative advocacy work in stopping budget cuts in the developmental disability services system and much more. In 2009, I went on my first business trip to my first Disability Policy Seminar in Washington, DC where I met my mentor, the one-and-only Kim Musheno. Kim, who is Ms. calm, cool and collected. At DPS I discovered my passion for federal disability policy and advocacy.
Over the years, I have held several internships and fellowships at the federal level doing consulting with various groups. In the last five years. I have won numerous awards including the David Joyce Award and Advocate of the Year Award and Steven Bartlett Advocate of the Year Award, both from Autism Society and formerly known as Respectability now called Disability Belong. I am often known as the budget watchdog and the guardian of inclusion in the Vermont State House. A good chunk of the jobs I’ve had in the disability field have come via networking. When I lived in Vermont, I got home and community-based services – something I do not get right now.
Donald Taylor: Nicole, can you tell us about what person-centered thinking means and what it means to be person-centered?
Nicole LeBlanc: Historically, the system has been system-centered. People with disabilities used to live in large institutions and group homes locked away from society with no privacy or rights because we were seen as a danger and a burden to society. Back in the day, the system was based on the medical-moral model that sees people with disabilities as broken, in need of fixing. Disability in the past has been seen as something bad or a moral failing. At the heart of this old model is the “I’m the professional expert”, “I know what’s best for you”, “power over” mentality. As decades have gone on, thanks to tireless activists and allies in the disability rights movement, we have moved toward a new paradigm of seeing disability as a natural part of the human experience. We have pushed the system to be more person centered or as the World Health Organization says, a person is more or less disabled based on their interactions within the environment.
It’s the environment that is the problem, not the person with a disability. Person-centered thinking values and respects a person with intellectual and developmental disabilities, gifts, talents, strengths, weaknesses and goals, and life dreams. Being person-centered is about doing with the person, not for the person. Person-centeredness is about people with disabilities being the boss, unlike the old model where the professional experts were the boss of us and dictated what services and supports we needed. Person-centered thinking and person-centered planning processes for home and community-based services is about us being in charge of our lives. People with disabilities need support, not overprotection.
As Franklin Delano Roosevelt said, true individual freedom cannot exist without economic security and independence. In person centered planning, the person is at the center rather than the system. Ultimate control and decisions about all aspects of a person’s life are made by the person and/or with decision-making supports from the people the person chooses to be involved. Decisions about services and supports are based on what is important to us. What is important for us and the people we choose to be part of this process are the people that know us and are closest to us, to us.
Donald Taylor: Thanks, Nicole, for that context. Now, can you please share your perspective on best practices for person-centered thinking when engaging people with disabilities around employment? Why should these approaches be tailored to a person’s individual needs and goals?
Nicole LeBlanc: Great question, Donald. Some best practices for person-centered thinking when it comes to helping people with disabilities excel in employment include using customer-focused job development, also known as customized employment. Customized employment focuses on carving out jobs for people with disabilities based on our strengths, talents, hopes and desires. Customized employment is a win-win because it offers many great benefits to both employers and people with disabilities. Job carving can also allow employers to reevaluate workloads by creating a new position to fit someone with a disability. It is essential that we support people with disabilities in going after their dream jobs. Person-centeredness in employment is supporting people with disabilities to go after their dreams and not just telling us that we should just go into certain roles that are fast growing. Another thing at the heart of person-centeredness is embracing the dignity of risk and supporting people with disabilities to get outside of their comfort zone.
Like people without disabilities, people with disabilities should be able to try new things and have the right to learn from failure. You know, for instance, just placing someone with a disability in any old job slot is an example of what is not person centered. Person centeredness and employment is allowing people with developmental disabilities to control their own destinies. Too often our society shelters people with disabilities and restricts their choices and independence. The motto I live by is “Control your own destiny or someone else will”, which comes from the book, Seven Habits of Highly Effective Teens and People.
Another major part of taking a person-centered approach to employment involves focusing on careers, not just jobs. Through the process of discovery, often people with disabilities have jobs in the four Fs of disability, employment: food, filth, flowers and filing, which are often repetitive tasks. People with disabilities should be supported in discovering their skills, talents, strengths, and passions that could become their career. Agencies, direct support providers and families need to have high expectations, presume competence and presume employability. It’s important for people with disabilities to have opportunities to develop careers, to get professional jobs, like working in the nonprofit sector, in the government, and in healthcare companies, like I do. No one is too disabled to live and work and thrive in the community. Don’t assume what we can and cannot do based on our disabilities.
Some other good things to keep in mind are avoiding the disability double standard. Don’t hold people with disabilities to a higher standard than those without disabilities when it comes to making mistakes. For instance, like bouncing a check, taking the wrong bus, or let’s say you have to go to an event and say, you get stuck someplace because you discover you don’t have enough money on your Uber / Lyft ride gift card or enough money in your account to get you home (something that I’ve experienced). Embrace “important-to”, “important-for”, “nothing about us without us” – which “nothing about us without us” is the motto of the self-advocacy and civil rights movement. It is a concept that focuses on what is important to us and what we need for good supports in our lives. Working in a person-centered way requires us to see the person first, what matters to them, not just what is wrong with them. Example: what routines in their daily life are important to them, like going to self-advocacy group, going to their job or going to, let’s say, the store to get their favorite breakfast food. In the case of important for them: staying healthy and not catching COVID due to high risk of complications is one example of important for them.
Donald Taylor: Thanks, Nicole. These are some important ideas for listeners to understand. Now, can you talk about some basic dos for person-centered thinking around employment?
Nicole LeBlanc: Here are some examples of the dos for being person-centered when engaging people with disabilities around employment and in the person-centered planning process.
Number one, embrace the dignity of risk and don’t be overprotective.
Number two, have high expectations. As I often say, I don’t suffer from autism. I suffer from low expectation syndrome.
Ask what the person prefers with respect to people-first versus identity-first. Respectful language. For example, if you need to mention a person with a disability, say “person with a disability”, not “disabled person” or “special needs”.
Use plain language, not all the system gobbledygook. Plain language is anything written between a fourth and sixth grade levels. Plain language is inclusive language – [it] makes people feel like they belong at the table. You can learn more about plain language at www.plainlanguage.gov or selfadvocacyinfo.org, which is the website for SARTAC, Self Advocacy Resource and Technical Assistance Center, where they do training on plain language.
Another thing: presume competence. Don’t assume what we can and cannot do based on our disability. Learn to let go. This is about not being overprotective as a parent or professional. When supporting adults with developmental disabilities, it’s about giving people with disabilities freedom in the community to live, work, try new things, mess up or fail. Too often we hold people with disabilities to higher standards than those without disabilities. For instance, bouncing checks, running outta food during the month, getting on the wrong bus. People with disabilities should not always have to be perfect at everything in life, and we should, and we shouldn’t always be punished harsher than those without disabilities.
Number seven: have an accessible agenda for person-centered planning meetings. This means it should be in plain language so everyone can understand what is going on and what’s gonna be discussed.
Number eight: dream big.
Number nine: focus on supporting the person in discovery of goals, hopes and dreams and specific areas of life like employment.
Number ten: help clarify who can provide support around the person’s specific goals: employment, health, financial, et cetera; like a job coach, direct support professional, shared living provider, family member, and/or other allies/friends.
Eleven: do believe in us.
Donald Taylor: Nicole, can you tell us some don’ts if you want to be person-centered in your approach to employment?
Nicole LeBlanc: Sure, Donald. Here are some don’ts that I recommend when it comes to being person-centered in conversations and planning meetings about employment.
Don’t be overprotective and risk adverse. Don’t hold people to higher standards than those without disabilities. For instance, bouncing a check, getting on the wrong bus, resulting in harsher punishment for people with disabilities compared to those without disabilities. Don’t use offensive or outdated terms like “special needs” or the word “mild MR”. Don’t treat adults with disabilities as kids by saying things like, this is my foster daughter, so-and-so when introducing us to others. Avoid using or referring to the developmental age mindset, meaning don’t say Suzy Q has a mind of an 8-year-old. Don’t speak too fast. Don’t use lots of acronyms or what I call eight alphabet soup. Don’t use sarcasm or idioms or sugarcoat it. Tell it like it is. Sarcasms and subtle humor can leave some people out of the conversation. Many people with autism struggle with figuring out the meaning of sarcastic jokes. I know I certainly struggle with that. Be creative. Think outside the box. When you have always done what you have always done, you will always get what you have always got.
Donald Taylor: Thanks, Nicole. Can you tell us more about why honoring a person’s goals and wishes is essential to person-centered thinking and planning related to employment?
Nicole LeBlanc: Honoring a person’s dreams, goals and wishes is an essential part of being person-centered. This is because it shows respect for our personhood. It’s important that providers and families put themselves in our shoes. Empathy is a two way street. Employment is one major aspect of having a good life. Many states, particularly the last several years, become employment first states where the first service you get when you go through the waiver process is employment. Maryland, the state that I live in is an employment first State. Employment is one of the keys to true community inclusion because without money, you can’t really do much in life. When people with disabilities work, society sees people with disabilities in a much more positive light. They see us as givers, not just takers from the taxpayers.
Donald Taylor: What are some types of things someone might discuss in a person-centered employment planning meeting.
Nicole LeBlanc: I presented and took part in a discussion about the intersectionality of person-centered planning and employment at the TASH Conference in 2023, and the presentation addresses some of this. The person should be able to choose who to include in the meeting or meetings. Person-centered employment planning involves the person talking about their overall goals, dreams, desires and preferences. Like, I want a job, I wanna make money. I wanna have a good life, but also what kind of place do I wanna work at? Like what type of organization or business. Do I want an in-person / essential or a virtual / remote job? Who will my coworkers be? What will my schedule look like? You might also focus on discovery – like what are the skills and talents I have that could help me get a job? It might also include discussion about post-secondary education that could support their employment goals, like going to ThinkCollege and other related goals like being financially independent or saving money for a big purchase. Person-centered employment planning would also focus on what services and supports someone might need to reach their goals for employment.
Donald Taylor: What tools and resources are available for people who want to learn more about person-centered thinking and person-centered planning?
Nicole LeBlanc: National Center on Advancing Person-Centered Practices and Systems, otherwise known as NCAPPS, which is run by HSRI, Human Services Research Institute – one of the companies I’ve worked for – publishes resources on person-centered thinking and planning on their website.
There’s also tools like the Integrated Supports Star from Charting the LifeCourse. [The] Integrated Support Star principle and tool can be used by anyone – families, individuals, professionals – to guide their thinking about supports. It can be used for mapping current services and supports, problem solving for specific need or planning. Next steps to start can help explore current needs, identify gaps, and plan how to access supports for the future. The tool can be used to guide a conversation over the phone or be facilitated at an in-person planning meeting with one person or a group of people, or an overview of how and why to use the Integrated Support Star. DETAC also did a webinar with NCAPPS in January 2024 about the role of person-centered planning for employment support.
Donald Taylor: Nicole, are there any final thoughts you’d like to share on this topic before we close it out?
Nicole LeBlanc: Empathy is a two way street. Believe in us. Support us in meeting our goals as we define them, with the people that we want to have engaged in the process. Have patience. Use available information, resources, and support to make an informed choice about your career. Remember, we want the same things in life as the neurotypical or non-disabled world does. Honoring our wishes and goals is about showing respect for us as people with disabilities to be creative. Remember: there is a job out there for everyone. No one is too disabled to live and work in the community. Lastly, being person-centered is just the right thing to do. It’s the moral thing to do. And [chuckles] lastly, the motto I live by: control your own destiny or someone else, will. Act or be acted upon.
Donald Taylor: Nicole LeBlanc, thanks for talking to us about person-centered thinking and employment today.
Nicole LeBlanc: It’s been great being on your show today.
Announcer: You’ve been listening to the AOD Disability Employment Technical Assistance Center podcast.
Today we spoke with Nicole LeBlanc, DETAC’s self-advocate advisor. For more from Nicole, you can read her recent blog post on the DETAC website titled, “A Self Advocate’s Perspective on a Person-Centered Approach to Employment for People with Disabilities“.
The AOD Disability Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group and TASH, created by a grant from the Administration for Community Living to provide evidence-based training and technical assistance to Administration on Disabilities grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com. For news and alerts about upcoming webinars and podcasts, you can follow us on Facebook, Threads, LinkedIn and X.
[music begins playing softly in the background]
Music for the DETAC podcast is an original composition and performance by Sunny Cefaratti, the Co-Director and Autistic Self-Advocacy Mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org.
We’ll have another episode on competitive integrated employment for you in the near future.
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This discussion was originally recorded on August 20, 2024.
This audio recording and transcript has been lightly edited for content and clarity.
