Looking at Cross Disability Collaboration

Systems Change Through Unity

2012

Looking at Cross Disability Collaboration:

Systems Change through Unity

The Café TAC is funded by a grant from the Center for Mental Health Services, Substance Abuse Mental Health Services Administration, U.S. Department of Health and Human

Services. The views, opinions, and content of this publication are those of the authors and do not necessarily reflect the views, opinions, or policies of SAMHSA or DHHS.

This publication was developed by C. Wells, Axis Group I, LLC for the Café TAC

Introduction

For decades, various disability organizations and advocates have made great strides in their movement to promote a more responsive system of care that is adequate, affordable, community based, and founded upon consumer, family, youth, and patient driven principles. As organizations emerged across the country, funding began to force them into “choosing” populations based upon their funding sources. Requirements, such as target population, disability and cause, and governing oversight helped perpetuate the development of disease or disability specific advocacy organizations. Economic and resource poverty have promoted a field where organizations have become fierce competitors, pitting one disease or disability against another.

With the emergence of the Affordable Care Act (ACA) and a wave of changes and challenges for service delivery systems, disability and advocacy groups have begun to feel the impact of the “circle your wagons” approach to advocacy. It has become apparent that advocates can no longer ignore diverging populations; they cannot ignore other disabilities tapping into the same service system, and it is not in the interest of the movement to compete with those who have similar stakes in system transformation.

In response to this changing landscape, The CAFÉ TA Center has undertaken and effort to gather the perspectives and listen to the voices of multiple advocates representing a wide range of disabilities, experiences and needs. The overarching goal of this effort is to develop ideas on how new, emerging, and struggling organizations could work with and learn from their counterparts throughout the disability community, promote their effectiveness and become drivers of systems change. The CAFÉ TA Center believes that with the scarcity of resources, it seems prudent to rally the troops and work as a collective and collaborative unit, leveraging the power of our many voices, rather than engaging multiple small-scale efforts that can be fragmented, and work against the natural underlying unity that can be found across the broader disability community.

"The secret is to gang up on the problem, rather than each other." - Thomas Stallkamp

Gathering the Voices

As a first step, The CAFÉ TA Center held a discussion group at The 14th Annual Family Café Conference in June of 2012. A group of disability representatives discussed their common needs and how their services and systems crossed with one another. The audience was asked to share ideas, experiences, and approaches related to creating a more unified effort at system transformation and

effective advocacy. The group expressed their common desire to work collaboratively, but was honest about the challenges they might face within that effort. They felt that the major issues related to cross disability collaboration included:

• A lack of education regarding “other” disabilities, services, and needs;

• The disability “hierarchy” that has aligned one disability over another;

• The lack of a cross disability national organization;

• Failure of leaders to capitalize on commodities and resources;

• A lack of political engagement; and

• Age divisions between adult, children, seniors that further fragment the efforts.

Three generalized solutions emerged as potential steps toward minimizing the gap between disability targeted advocacy and cross system transformation.

• Defragmentation of populations and the breakdown of silos that separate leaders, organizations, and the people they serve;

• Grassroots projects or models that could be replicated nationwide; and

• Cross disability brainstorming that would allow new ideas, leadership, and activities directed towards advocacy and system transformation.

This feedback set a base to begin further exploring the needs, issues, and challenges related to fostering a collaborative effort across various disability populations.

The next step for The CAFÉ TAC was to develop an online survey that would allow additional voices to become part of the conversation. This survey was shared with people representing a wide spectrum of disabilities, needs, and diseases, in order to ascertain their views on, and vision for, a more collaborative and united cross disability movement.

What We Heard:

REPRESENTATION: The participants in the project were representative of a diverse population. When asked to self-identify their population of representation based upon diagnosis, the respondents reported they were mainly those with a developmental disability followed by mental illness/mental health disorder, chronic illness, and injury related disability, as shown in Chart 1 below.

CHART 1

Mental Illness or Mental Health

Disorder

Developmental Disability

Chronic Illness Injury Related Disability

ADVOCACY EXPERIENCE: As seen in Chart 2, most of those responding describe themselves as advocates for themselves and others. The definition of “advocate” was not provided for them. The answers were based upon their own determination of their advocacy experience and expertise.

CHART 2

I am an advocate for myself

I advocate for others

I do not consider myself an advocate

INVOLVEMENT: Over 60% of these individuals were involved with a formal disability advocacy organization, as shown below in Chart 3.

CHART 3

Yes No

AFFILIATION TARGET POPULATION: The organizations that they are involved in included those serving persons with developmental disabilities, mental health issues, and some that serve both populations. Interestingly, nearly half of respondents declared that their organizations served both groups, as seen in the chart below.

CHART 4

Individuals with disabilities Mental illness or disorders

Both

COLLABORATION BENEFITS: Over 85% of the respondents felt that there would be definite benefits for disability groups to work together, regardless of their targeted population. Some of the practical ways they felt that systems change would benefit are portrayed in CHART 5.

CHART 5

More voters and numbers of people

advocating for change

Show of solidarity between disability

groups

Building upon one another’s

experiences and expertise

Sharing resources

between groups

BARRIERS: They also shared why they feel that these organizations do not work together more often. These barriers included a lack of knowledge about the needs of other populations, funding, turf guarding, and a lack of appropriate opportunities (See Chart 6). But, they also shared other challenges, such as a lack of manpower and leadership, agency service criteria that separate disability groups, fear, a lack of knowledge of the existence of other potential partner organizations, and organizations and advocates being overwhelmed with the amount of work they have to do in simply taking care of their own constituencies.

CHART 6

Funding Protecting their turf

Lack of opportunity

Lack of knowledge

about the needs of other disability

populations

When asked what can be done to facilitate cross disability collaboration, the ideas seemed endless. Many of them focused upon what individuals and organizations could do to break down barriers of collaboration, discussions about setting up pilots of collaboration that could be replicated, creating a willingness to work together, and developing options that would strengthen the leadership capacity of persons with disabilities so that they would be prepared to collaborate.

Next Steps

Multiple ideas and opportunities surfaced from this project. As The CAFÉ TAC moves forward with the information, it seems that there are many ways to use this as an opportunity to begin a shift toward a collaborative effort in systems transformation, building upon the vast pool of knowledge,

skills, and expertise that exists across all disability populations. The CAFÉ TAC challenges all organizations and leaders to:

• Reach out to one another and create partnerships despite competition, turfs, and funding silos;

• Set up cross trainings to educate one another on population needs, programs, and services;

• Develop and share partnerships that work, creating a pool of resources for others to utilize in developing their own programs; and

• Establish a culture of acceptance and understanding of all individuals with disabilities, regardless of their diagnosis, situation, or financing infrastructure.

Stay tuned to more discussions regarding cross disability collaboration and the transformation of the system through a unified partnership.

The CAFÉ TA Center is a program of The Family Café, a cross-disability organization that has been connecting individuals with information, training and resources for more than twelve years. The Center is supported by SAMHSA to operate one of its five national technical assistance centers; providing technical assistance, training, and resources that facilitate the restructuring of the mental health system through effective consumer directed approaches for adults with

serious mental illnesses across the country. The project utilizes a peer-driven approach that is founded upon strategies and interventions consistent with self-determination and recovery models and guided by expert consultants and national technical assistance professionals. The CAFÉ TA Center target areas includes workforce development, supported education, and the dissemination of resources and training that will ensure consumer leaders contribute to the system’s capacity to make adjustments at every level to ensure a responsive system of care.

The CAFÉ TAC Tallahassee, FL 32301 850/224-4670 (voice) 850/224-4674 (fax) http://cafetacenter.net/