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Spotlight on Peer Support

Posted on | by trex

Written by Bailey Patterson

This Disability Pride Month, we are shining a spotlight on peer support! Within the mental health community, it is widely understood that lived experience is a valuable asset. People who are experiencing a crisis or need mental health support may seek out the help of doctors or other professionals, but, increasingly, this is not the only option available. 

Many organizations are choosing to build systems of support focused on connecting people with mental health conditions to their peers with lived experience. The philosophy of this model of care centers around the leadership of people with lived experience of mental health conditions. These individuals are valuable due to their first-hand knowledge of what others in similar situations may need. Through their expertise in their own lives, they are able to connect with people seeking support in deep and meaningful ways. One important feature of this approach is the emphasis of a lack of hierarchy between someone providing and receiving care. Many times, professionals such as doctors, therapists, and social workers are viewed as being in positions of authority over their patients. They follow policies and procedures that may require them to refer their client to care that the client may not have consented to. In a peer support model, this breaks down that barrier. 

two people holding hands and laughing, one of them uses a cane for mobility, another uses a power wheelchair

One organization championing this approach is Project LETS. Project LETS’ mission is “[to] build peer support collectives, lead political education, develop new knowledge and language around mental distress, organize and advocate for the liberation of our community members globally, and create innovative, peer-led, alternatives to our current mental health system.” To this effort, Project LETS has satellite programs in universities and high schools all over the country where people with lived experience of psychiatric disability are trained to provide peer support. Additionally, Project LETS has an online form where individuals who need support can be matched with a peer for support on a rolling basis. 

Project LETS identifies peer support as one of their core values and states, “People who have lived experience with mental illness, disability, trauma, and/or neurodivergence can offer a specific, unique, culturally and socially responsive, and accessible type of mental health care (known as peer support). We do not believe that peer support happens on a hierarchical level — between someone who is ‘recovered’ and someone who is ‘still sick.’” 

four people at a table speaking to each other. one is speaking while the other three are listening

There is evidence to support this philosophy. One systematic review of peer support for young people with anxiety and depression concluded that “Altogether, the available evidence suggests that peer work is a safe, effective, flexible and cost-effective intervention for adults, which promotes hope, empowerment, patient activation, and self-efficacy, and reduces hospitalisations.” All this considered, peer support is part of the future of effective and liberating crisis care for people with psychiatric disabilities. 

To learn more about peer support visit these resources:

The effectiveness of peer support from a person with lived experience of mental health challenges for young people with anxiety and depression: a systematic review

When There’s a Crisis, Call a Peer by The Bazelon Center for Mental Health Law

Project LETS Peer Support Webpage 

What are mad maps?

What are Mad Maps? 

Posted on | by trex

Written by Bailey Patterson

Mad Maps are a crisis intervention and personal expression tool created by and for people with lived experience of psychiatric disability. Mad Maps are a way to externalize elements that affect someone in a crisis state and can act as a guide for their future self who might need some grounding. They include things that give the person who created them joy and a road to feeling better.

Mad Maps were created by the Icarus Project. The Icarus Project was a collection of peer support networks and advocacy groups made up of people who identify as Mad, mentally ill, and/or neurodivergent. This group eventually evolved into the Fireweed Collective, which it is known as today. 

Mad Maps are intended to be a more personal alternative to traditional crisis plans. In The Icarus Project’s guidebook, “Madness and Oppression: Paths to Personal Transformation & Collective Liberation”,  readers who intend to create Mad Maps are asked to think deeply about the types of oppression they experienced and how that oppression affected them and their mental wellbeing. This guidebook encourages readers to connect ways to manage and dismantle oppression through coping methods. Through this, Mad Maps acknowledge the systemic factors that lead to crisis and distress within individuals. 

scan of someone's mad map. on the left, there is original artwork with a sentence, "how do you mend a broken heart?....." in the middle, there are things the person is worried about (not being allowed to express themself, not feeling loved, etc.), on the right says "self love!" with drawings that make them happy
Image from Madness & Oppression, Paths to Personal Transformation and & Collective Liberation: A Mad Maps Guide by The Icarus Project entitled “IMad Maps In Process image courtesy of Sacramento Icarus Project”

How to Make a Mad Map:

The medium for Mad Maps can be as traditional or as expansive as you choose. A map can be created with pencil and paper, an online document, with collage, in a zine, in a sculpture, or other mediums. 

The actual elements of a Mad Map can include anything but typically include information that would be good to have accessible in a crisis or state of distress. 

These elements might include daily routines that are useful to your mental health, signs that a crisis might be coming on, and your wishes for friends and family for how they can support you at this time. 

Practical Information to Include

For this information to be helpful, it is important to add details. You might want to include: 

  • Names and phone numbers of support people, 
  • Specific medications or interventions you consent to and those you would not consent to
  • Recipes for foods that are easy to manage when experiencing a crisis

These pieces of information can act as a lifeline if you need direction and specific help. 

Other Things to Include

Map Maps should also include sources of joy and inspiration that have been helpful to you in the past. This could include:

  • Names of your favorite songs
  • Shows and movies you like to watch
  • Quotes
  • Pictures of pets and friends
  • Anything that helps you navigate a difficult state 

All of these elements can be connected visually or in any way that makes sense to you. This is your roadmap for navigating your own body-mind, so make sure to make it personal, easy to use, and something you would want to use. 

Everyone is constantly evolving and changing, so leave space on your Mad Map to add new things as time goes on. Over time, you will learn new skills and find new sources of joy you might want to include in your map. 

Overall, make sure that your map is true to you and helpful in the ways that you need. Modify, add on, or rewrite the narrative to suit you.  

For more information and inspiration, check out these additional resources and guides about Mad Mapping:

Fireweed Collective Madness and Oppression Guide

Icarus Project – Mapping Our Madness

people with disabilities officially classified as a population experiencing health disparities

People with disabilities officially classified as a population experiencing health disparities

Posted on | by trex

Written by Eliott Hamilton, Student Informatician

In September 2023, the National Institute on Minority Health and Health Disparities (NIMHD) officially classified people with disabilities as a population experiencing health disparities. This decision is a game changer for disability-inclusive research and highlights the pressing need to better understand and address the unique healthcare obstacles individuals with disabilities face.

What are Health Disparities?

A health disparity is a “health difference that adversely affects disadvantaged populations in comparison to a reference population, based on one or more health outcomes. All populations with health disparities are socially disadvantaged due in part to being subject to racist or discriminatory acts and are underserved in health care.”

Disparities in health outcomes are categorized as:

  • A higher likelihood of disease, an earlier onset of disease, or a more aggressive progression of disease
  • Increased mortality rates with certain health conditions, including premature mortality
  • Greater global burden of disease (GBD)
  • Lower outcomes on self-reported data tracking day-to-day functioning and symptom collections

For people with disabilities, health disparities can vary as widely as disabilities themselves, but many people within the disability community share experiences, like health conditions not taken seriously, poorer mental health, and reduced life expectancy due to limited treatment options.

What does NIMHD’s decision mean for people with disabilities?

The National Institute on Minority Health and Health Disparities (NIMHD)’s decision to recognize and research people with disabilities as a population that experiences health disparities is significant for several reasons: 

Recognition of Unique Challenges: People with disabilities often face unique health challenges related to their disabilities. These challenges can include higher rates of certain health conditions, barriers to accessing healthcare, and disparities in health outcomes. Recognizing disability as a category for health disparities research acknowledges the specific needs and experiences of this population.

Inclusivity in Research: By designating people with disabilities as a population with health disparities, the NIH is highlighting the importance of inclusivity in research. It emphasizes the need to include individuals with disabilities in health studies to better understand their health status, identify disparities, and develop interventions that address their specific needs.

Promoting Health Equity: The designation demonstrates the commitment to promoting health equity for all populations, including those with disabilities. It acknowledges disparities in health outcomes and healthcare access exist within the disability community and emphasizes the importance of addressing these inequities.

Policy Implications: The recognition of people with disabilities as a population with health disparities can have implications for policy development and resource allocation. It may lead to focused initiatives, interventions, and policies directed at improving the health and well-being of people with disabilities, thereby reducing disparities.

Advocacy and Awareness: The designation helps raise awareness about the unique health challenges faced by people with disabilities, fostering advocacy for their rights and healthcare needs. It encourages a broader understanding of health disparities beyond traditional demographic categories, recognizing disability as a significant factor

What Are the Future Implications?

With this decision to acknowledge people with disabilities as a researchable population, the NIMHD is specifically focusing on the need for additional, more inclusive research. Alongside this designation, the NIMHD announced new research funding designated to disability healthcare equity – incentivizing researchers to address unique health disparities the disability community faces.

In addition to understanding health outcomes specific to the disability community, funding research to address disability healthcare equity is the first step in supporting inclusive research in healthcare. Future studies by the NIMHD will likely incorporate a more accurately diverse representation of the general population. 

Representation of people with diverse disabilities in health disparities research leads to a better understanding of unique health needs, challenges disabled people face within their healthcare, and the wide range of disparities the community deals with daily.

HDI dedicates Maurice Dawson, Jr. Training Rooms

Posted on | by Glen Jennings

Christina Espinosa remembers Maurice Dawson as a beloved member of HDI’s community. 

“Maurice was one of the few people at HDI as a member of our tech team that was able to connect with people across the institute…that was inherently special to be able to be someone got to connect with so many people but was also always very present and willing to help problem solve” Espinosa, the Community Education Division Director, said. “He had his own quirky style of humor. He was amazing with sending memes. He would always send back a meme on chat or in Teams.”

His friends and colleagues deeply appreciated how eager he was to help people with any of their tech-related problems and how quick he was with a joke in team meetings. Many member’s of HDI’s team were devastated when he passed away last year. But since then, HDI has made multiple efforts to honor his memory. 

As one of these efforts, they’ve created space for community and education at their new location in Lexington’s Huguenard building. 

There are two spaces at Huguenard that were dedicated to Dawson’s memory during its Feb. 16 ribbon cutting – the training room and the meeting room, as he was a common fixture in both places at HDI’s previous Coldstream offices. Some members of Dawson’s family were also there in attendance. His mother said a few words. She was just really grateful that we got to know him and were able to honor him in that place, too,” Espinosa said. 

Already the training room is seeing use. “Any project that needs to reserve a space that can house twenty to potentially forty people can reserve it for trainings for larger project meetings,” Espinosa said. “It’s also being currently used as a spot to gather for lunch, as a as an opportunity to connect with other HDI staff.” 

In addition, Dawson’s art and photographs of the Coldstream Farm decorate these spaces. 

In addition to these dedications, HDI is also honoring Dawson through its Maurice Dawson, Jr. Technology Training Initiative. 

HDI Podcast Logo

State of HDI: Quality Improvement and Data with Laura Butler

Posted on | by Beth Potter

Transcript

[Patti] Hello, and welcome to the State of HDI, a podcast of the University of Kentucky Human Development Institute. I’m Patti Singleton, and in the studio with me today is Laura Butler, director of the Kentucky Core Indicators Project. Laura, it’s so good to have you here.

[Laura] Thanks, Patti. I’m happy to be here.

[Patti] Laura, today’s topic is on quality improvement and data. So, tell me about this project.

[Laura] So, the National Core Indicators is a project where we survey adults who are receiving services from the state. So, in Kentucky’s case, it’s two Medicaid waiver services, the Michelle P waiver and the supports for Community Living waiver. 48 other states also participate in the survey. And there are other surveys within the project as well.

[Patti] So, 48 states, that’s a lot of data. So, based on the data you’ve collected, and you’ve seen, how is Kentucky performing as compared to some of the other states?

[Laura] So, it depends on the items that we look at. And that is one of the things that our quality improvement committee does look at is to see how Kentucky does rank in terms of some different areas. They call them indicators for this survey and to see how Kentucky is performing nationally, and compared to some other states that might be benchmark states for us.

[Patti] And you mentioned a committee, can you tell me who is represented on that committee? 

[Laura] Yeah, so the committee is made up of some other HDI’ers, as well as some folks from different state agencies, including the division of developmental and intellectual disability, and also most importantly, family members of people who are receiving the services and people who are actually receiving the services.

[Patti] So, I assume this dataset can really help people with advocacy and policy efforts.

We’re seeing that happen more and more on a local and state level, which is really exciting. And then the data are also being used for federal quality management and assessment measures.

[Patti] So having such a large data set likely also gives a great picture of progress of people with disabilities over time. And so, what are some of those trends? 

[Laura] As with everything else, we saw changes during COVID. We did stop surveying in March 2020, when everything else stopped. But we did have about three fourths of our surveys completed at that point. So, we did look at that data as an immediate pre pandemic snapshot. And so, we – like the rest of the country – saw people, fewer people working, fewer people spending time in the community, things like that. But we’ve seen a really significant rebound in that in the last year. The survey has changed somewhat, it does change in response to different things that are going on in the community. So, there are survey questions that have been added to measure what is called often the final rule or the settings rule that Medicaid has. And that’s about how people live as you would think with the settings rule. Those are newer questions. So, we’re seeing some changes there. As people, as agencies and providers try to get in line with that role. We see other changes as well in terms of employment, it goes up and down. Other items in terms of people who have meaningful relationships, or people who feel lonely, those go up and down. But generally, we see positive trends for Kentuckians in those items.

[Patti] I certainly think a lot of people have probably a stress response when we think about data. And so, tell me how this project is making data into information we can all use.

[Laura] Yeah, so it’s really important for us that people use the data, the big survey that we use is collected directly from people who are receiving the services. So, it is a really important perspective. So, we want to see it used. So, what we do is present the data in a number of different ways. We have just the data tables for people who are really into just raw data and looking at that. We have those out there. Then we also work to create some easy-read documents. The National – National Core Indicators folks do that as well with a larger data, but we do it with the data that we see here in Kentucky and specifically with the items that the quality improvement committee looks at. So, we work with people with disabilities to help us develop those and make sure that they work for a different variety of people. So, we probably have some that are meant for provider agencies, some that are meant for people who are receiving services, others that can be used for policymakers.

[Patti] And we’ll make sure that we have links to those in the show notes today. So finally, what changes do you see in the future?

[Laura] So, it’s really hard to tell. I think the national folks that design the survey are really responsive to what is happening in the community and what’s happening with policy and politics, honestly. And so, as things change, we’ll see that change as well. One of the issues that’s really big right now is getting enough people to provide services. So, the workforce of people who are providing services is really challenging right now. And that really impacts the quality of life for people who are receiving these services. So, we’re seeing right now the emphasis on that workforce, the direct support professionals, and we’re seeing a lot of emphasis on making sure that those people are retained and paid well and treated well, and we do have a survey. It’s called the State of the Workforce survey that’s specific to measuring that in terms of compensation and retention of the direct support professionals.

[Patti] Well, Laura, it was so great to sit down with you today and learn more about your project.

[Laura] Thanks for having me, Patti.