Watch one or more video clips of individuals as they explain their experience of psychiatric disability as adolescents or young adults. As you watch the clips, note the strategies, resources, and supports that each individual mentions. Also, note how these supportive factors came to be. Did the individual request them themselves or did another person (e.g., an adult) secure the supports for them?

*Stella https://www.youtube.com/watch?v=DQZdl4yAudI

*Kevin Breel TED on Depression at age 19 – this one is pretty powerful https://www.ted.com/talks/kevin_breel_confessions_of_a_depressed_comic#t-150819

*Royce White Basketball player https://www.usatoday.com/story/sports/nba/2013/02/08/royce-white-houston-rockets-anxiety-disorder/1890421/

Most of us don’t go into occupational therapy thinking we need to understand policy or politics yet our entire lives, and more importantly, the lives of those we serve are directed by policy and impacted by politics every day. Many therapists go to work each day and focus on fixing the problems associated with diagnosis or highlighted by the IEP or 504 plans. We put only a little thought into changing the world they deal with when they leave our care. As mental health providers we work with people (including kids) who are very marginalized, due in large part to stigma. We say we are interested in participation so we have a particular obligation to know the policies that govern people’s lives and their access to school, work and community engagement.

How do we Advocate?

So often I have heard OT folks say they want to advocate for those who don’t have a voice, or advocate to protect their clients. I think sometimes we have gotten a bit full our ourselves. My experience, having been immersed in the disability world, is that people don’t want professionals speaking for them. One could argue, I guess, that kids are not in a position to advocate for themselves but I would counter with a reminder of the Parkland High School kids after the school shooting in Florida. These kids went beyond their personal experience and intentionally sought out kids from all over the country who were experiencing gun violence when they created their movement. We must begin by not underestimating the power of people speaking for themselves. Do we have a role? Absolutely. I do believe we must advocate for clients who are not getting the best services in hospitals, or whose rights are being violated by teams that are not aware of the laws or the resources. I also believe we can be ally’s – we can stand with people and use our power in the system to back up their advocacy efforts. Lastly, especially with children, we can support their efforts to find their voice and learn to self-advocate effectively.

Advocacy could happen on many levels. Your professional state and federal associations are always advocating for your license and for your practice. Recently in Illinois ILOTA reviewed 6 or 7 bills that were submitted in the 2019 General Assembly, to be sure that other professions were not overstepping their boundaries and providing services that fall into our domain. AOTA recently advocated to get occupational therapists included in the list of core mental health providers in the country, opening the door for getting tuition relief if we work in underserved areas providing mental health services.

We might be in positions to support advocacy for an individual’s needs, programmatic needs, or changes in public policy, such as the community, to support participation for a group. Helping older adults develop an advocacy plan geared toward developing walkable communities would be one example of population based public policy advocacy. Again though, in all of these situations it is much more effective if the person or members of the group do the advocating. We certainly can offer our lens on the barriers to participation – that language can make an important difference when people (and kids) are preparing to advocate for their needs.

Organizations such as NAMI, or even AOTA, provide support for advocacy planning (Merryman, 2010). Below are four preparatory steps adapted from Merryman (2010) that you can use when planning to advocate for change:

1) Gather information on various proposals, issues, policies, etc.

2) Analyze the content – look for what is included, not included, degree of access or choice, funding, benefits, stakeholders, time and place.

3) Complete a supports and barriers list – looking at the outcome of occupational participation

4) Create written information sheets – handouts, fact sheets, other education materials. Then identify key stakeholders and plan visits and practice presentations.

Policy is a moving target. On December 13, 2016 congress passed the Twenty First Century Cures act that could potentially change the helping arena for people of all ages who are dealing with mental health issues. The Cures Act was a compromise from two bills that were debated for many years (The Mental Health Reform Act and the Helping Families in Mental Health Crisis Act). At issue is that one bill (Families in Crisis) advocated for taking away confidentiality and privacy rights and increased the ability for families and health workers to forced treatment and institutionalization on people. It assumed people didn’t have the competence to make their own choices. The Reform bill recognized the wide variety of approaches to treatment that are both outcome and cost effective and still allowed people with psychiatric disorders to retain control over their privacy and treatment decisions. This is an age old argument that has existed even long before there was medicine to address symptoms. To understand this, take a moment to read this position statement on Involuntary Treatment by Mental Health America - one of the biggest advocacy organizations for rights for people with psychiatric disabilities.

http://www.mentalhealthamerica.net/positions/involuntary-treatment

The Cures Act rolled back on some of the concerning parts of the original Crisis bill such as eliminating the right to privacy for people diagnosed with a psychiatric disorder and allowing for outpatient commitment. It is focused a little more on access to community-based care and EBPs that have efficacy, however it retains some access to forced treatment and it does remove one barrier to institutionalization that has been in place since the 60’s. Unfortunately the Cures Act ended up including a fair amount of titles focused on pharmacy (moving drugs to market sooner, etc) and significantly fewer stipulations to support community based care services than the original act. Compromise in policy making is important, but also frustrating at times.

The Bazelon Center for Mental Health Law is a great resource for understanding the legal battles happening all over the country related to rights for people and children with psychiatric disabilities. Take a moment to explore some of the advocacy resources they have listed on their website here. http://www.bazelon.org/resource-library/advocacy-resources/

All of these organizations are interested in people getting help they need. The difference is in how help is provided. If you explore deep enough you will see that some of the resources continue to support involuntary treatment while others advocate for what has been shown to be more effective and for most, more desirable services. 65% of people do not seek help due to stigma so making help more desirable and effective could effectively reduce stigma improve the nations mental health outcomes. It will be interesting to see how this plays out.

Education related policy always impacts kids with disabilities. It is policy that allows kids access to education, to educational supports, to bus service, to food, etc. Every policy that impacts kids with disabilities will impact OT’s who work with them. The struggle is that education is largely legislated and regulated at the state level. Understanding state and federal policy requires some digging. There are a number of Education Advocacy Groups that can help you make sense of education policy. Here is an example of one such group. Like the mental health groups, they all have a set of values that drive their focus. Take a moment to look at this website before moving on. http://stand.org/national/about.

Staying active in the professional organizations will help you keep up with policy. Both AOTA and ILOTA (and other state associations) will alert you if there is a policy issue that will affect your job or the kids you work with so that you can take action.

NAMI is advocating for change that impacts children’s mental health

The National Alliance on Mental Illness is advocating for better knowledge and acceptance of psychiatric disorders with their program Ending the Silence. Watch the video here to learn more about this middle and high school program designed to teach the signs of a psychiatric disorder to kids so they recognize what is happening to them, know they are not alone. The goals is to help kid seek help earlier and not be afraid. Ending the Silence also hopes to decrease stigma with peer to peer programs (kids talking to kids). The message is no matter what, they will be okay.

https://www.nami.org/Find-Support/NAMI-Programs/NAMI-Ending-the-Silence

For me one of the most sole searching moments in my disability studies program was when I proudly announced that I wished to empower people to reach for their goals in my OT practice. The silence was pretty loud. Then one of my favorite classmates kindly informed me that people with disabilities didn’t really need able bodied people to empower them. They just needed us to be part of the efforts to stop disempowering people with disabilities. I was invited to stand with my disabled cohort – to be an Ally – I think for the most part I was liked in my cohort J but that memory still stings a little. We are “helpers” and we want to do good things. But it is important to know there is a big difference between advocating to changing the systems and environments that impede participation and advocating for things we think people need who have disabilities. Remember “Nothing about us without us.”

Read this article by Amy Sequenzia about Autism Awareness to get a sense for how good intentions can come across when disable voices are not included in the decisions that impact them. https://ollibean.com/i-dont-want-your-awareness/

One of the most important things we can do is help kids develop the habits and skills to self-advocate effectively – the key being effectively. Self-advocacy is defined as the ability to speak up for what you need. This ability requires several things: Being aware of your strengths and your challenges; knowing the most effective supports that will address your needs; and having the ability to communicate those needs effectively to the teacher (Lee, 2017).

Now, go the ME! Lessons website for teaching self-advocacy skills http://www.ou.edu/education/centers-and-partnerships/zarrow/trasition-education-materials/me-lessons-for-teaching-self-awareness-and-self-advocacy.html

Review the lessons

All the lessons are designed for groups and engage the children in activities. They are very much focused on skill building and touch on the three things listed above. Choose one lesson that you particularly like. Consider how you would alter that lesson to address the needs of youth with psychiatric disabilities. Also think and how you might incorporate occupation into the lesson. In other words, how could you help the kids build the same skills while engaged in occupations they value? What would you build into your group that would help them generalize the lessons to their daily life roles? Restructure the lesson to include your thoughts. Once downloaded the lessons can be edited. Go ahead and edit the lesson using a different font color. (Don’t worry about tracking cross outs).

Retrieved from: TOT 3: Advocacy and Self-Advocacy (2019)