Posted on October 31, 2017

Earlier this month, CQL | The Council on Quality and Leadership hosted our 2017 Conference, themed ‘Blueprint for Person-Centered Practices’ in Indianapolis, IN. The event brought together experts spanning diverse spheres of human services, not only in principle but in practice, including fifty presenters, two dozen breakout sessions, five keynote addresses, and two panel discussions.

In this edition of Capstone, members of CQL staff are sharing just a handful of the many takeaways that attendees experienced throughout the conference. This list doesn’t even come close to encompassing all of the lessons learned, but provides a broad overview of just some of the information covered at the conference.

1. Eye-Opening Employment Statistics

By Mary Kay Rizzolo, CQL President and CEO

Dr. Bill Kiernan gave an entertaining and enlightening talk on employment. The statistics are eye-opening! About 86% of youth with significant disabilities in school expect to get a job after graduation but only 16% actually do (a 70% difference)!

Why does this matter? Employment is tied not only to income, but to self-worth, a sense of accomplishment, and most importantly — friendship. Most people develop their best friendships at work and we know how important friendships are – they are tied to increased safety, increases in natural supports, and increased community participation.

The unemployment of people with disabilities also impacts our nation fiscally. Dr. Kiernan reported that each youth with a disability entering Social Security cost $250K in public payments and another $250K in lost tax revenue ($500K per person) over a life time!

So many of the soft skills we use in our daily employment are developed when we are young. Dr. Kiernan gave us some wonderful words of wisdom – start setting expectations of work for your child when they are young! Do not presume incompetence!

For more information on employment statistics visit: http://www.thinkwork.org/

2. An Innovative Approach To Sexuality Education

By Betsy Burns, CQL Quality Enhancement Specialist

On the morning of October, 17, 2017, I was working at the CQL registration table at the conference, when I was approached by a woman who said she was a presenter at the conference. Her name is Michelle Garcia and her breakout session was titled ‘An Innovative Sex Ed Curriculum For Persons With Disabilities.’ After I registered Ms. Garcia, I showed her to the room in which she would present later in the afternoon. I then went back to the registration table and looked up her presentation. I had previously noted that I was assigned to moderate another session during the exact time of Ms. Garcia’s presentation. I knew that I needed to trade with another CQL staff for an opportunity to moderate this session. You see, I had been a sexuality educator when I worked in an organization that provided supports and services for people with intellectual and developmental disabilities. I recall the time I spent in that organization creating what I thought was an innovative approach on sexuality education for persons with disabilities. And, it was for that time. It involved training for staff, counselling and education groups for people with disabilities, as well as a parent group and board/parent committee to review sexual consent determinations.

Having been away from this organization for quite some time, I had no knowledge of how the work had progressed. With that said, yes, I did get to moderate the session, ‘An Innovative Sex Ed Curriculum for Persons with Disabilities,’ presented by Michelle Garcia, Michelle Garcia, Psy.D & Associates. This curriculum was created based on a request from The Arc of Blair County in Pennsylvania. Michelle shared with the participants of this session that the request to develop this curriculum was due in part from the increasing risk of individuals with disabilities either being victimized and/or being incarcerated for what was referred to as “sexual behaviors.”

Michelle spoke about this curriculum unlike other things on the market and I have to agree this curriculum does have something that I have not seen before. This curriculum is not something that is simply purchased and arrives in a well put-together container with neatly organized folders with chapters and lesson plans. It is somewhat of a contractual agreement that builds on a relationship with the organization that purchased it. Yes, it is an actual curriculum with several well thought out lesson plans that are both innovative and interactive.

This curriculum includes:

• Sexuality education tailored to the needs of people with disabilities needs of people with disabilities regarding relationships, communication skills, sexuality, puberty, menopause, and other similar topics across the lifespan to help protect people from being a part of a crime as the perpetrator or victim.
• Ways to support the sexual rights of people with disabilities and tools that can be used for education, support, and redirection of sexually inappropriate behaviors.

The online curriculum is a program that is purchased along with the contractual agreement/ relationships that are built over a three-year period. Michelle and her staff work with the organization via SKYPE, providing coaching, support, and mentoring around the curriculum. This curriculum is also data-based, which demonstrates the success of the curriculum.

So yes, this is an innovative approach for sexuality education for people with disabilities. It is about creating a relationship with the organization, and having conversations about sexuality education to ensure that people with disabilities are being supported and respected as sexual human beings. On a personal note, I am glad that I traded to moderate this session. It was a great opportunity to see that there are people who are keeping the conversation going. There are people out there who are creating innovative approaches to sexuality education for people with disabilities and a palatable way in which providers can “come out of the closet” and be OK with the conversations about sexuality and disability.

3. Takeaways Involving True Transformation

By Angela Rapp Kennedy, CQL Vice President of Training and Learning Initiatives

In the session Supporting True Transformation Through State-Wide Initiatives, presenters, Laura Howell, Executive Director of the Maryland Association of Community Services (MACS), Shawn Kros, CEO of The Arc Northern Chesapeake Region, and Kathleen Durkin, Executive Director of The Arc Baltimore shared a framework, experiences, and outcomes from a three-day immersive retreat as part of the Moving Maryland Forward initiative. There was an application process and a financial commitment, which the participating organizations report as a great investment.

Tips to a successful retreat:

• Interest was so great they had to schedule two sessions
• Critical to an agency’s success with the process was the requirement each agency bring a team that included individuals supported by the agency, the CEO, direct support staff, management staff, and family members.
• Having subject matter experts/consultants readily available to each team in real time as they worked through the three-day process was essential.
• Participating organizations have seen substantive positive change as a result of their participation.

Unbeknownst to the presenters, a member of the audience, also from Maryland, shared that their organization had also participated and wholeheartedly endorsed the initiative. All of the presenters would be delighted to talk further about the process and how other entities might replicate the process.

4. Suzy and Supported Decision-Making

By Cathy Yadamec

Morgan Whitlatch from the National Resource Center for Supported Decision-Making, presented the session titled ‘Supported Decision-Making: Update On U.S. Trends And Best Practices.’ In this session, she described in everyday terms what Supported Decision-Making is, why it’s important, and where it stands in the United States.

She reminded me that when we, as supporters and allies of people with disabilities act respectfully, support empowerment, and listen, we convey a message to other people in the community that people with disabilities are respected and powerful. There are opportunities every day to make a difference. If we take advantage of those opportunities, it may be a positive experience for the person, members of the community, and even for ourselves.

I heard Morgan tell us about Suzy, a 22-year-old woman in Kentucky who had a guardian and was not allowed to make decisions about where she lived, how she spent or didn’t spend her money, and what happened to her body. On July 24, 2017 Suzy’s rights were fully restored. She now makes decisions-personal, medical, and financial with Supported Decision Making. Suzy is described as a sort of Jackie Robinson for restored rights. She is the first person on record in Kentucky to have her rights fully restored by the courts with Supported Decision-Making as an alternative to guardianship.

5. Disability Pride, Identity, and Community

By Carli Friedman, CQ Director of Research

One of the conference’s keynote speakers, Dave Hingsburger, gave three rousing presentations at Blueprint for Person-Centered Practices about the value of community – both in terms of fostering community for people with disabilities via disability pride and disability community and examining the ways microaggressions make community more difficult for people with disabilities. Dave explained, “we talk about community as if the streets are paved with gold, but the community is filled with prejudice…But it is difficult to make the community a place people have a stake in, a place people feel they belong.” Even nondisabled people who are well intended may reinforce prejudice and the otherness of people with disabilities through their subtle words and actions. For example, by always emphasizing people with disabilities are just like everyone else, which Dave reminds us we would never do to other social minorities, we ignore disability identity and disability community. While not always easy, one way to reduce microaggressions and ableism is by being introspective about one’s own biases and assumptions about people with disabilities.

Another crucial aspect is to recognize people with disabilities, the disability community, and the disability rights movement – those with lived experience – as the experts about their own lives and to listen to them accordingly. Moreover, we must recognize the value of disability community. Dave noted, “when we talk about community connections we always talk about with nondisabled people, not the disability community. That’s a problem.”

Community with other people with disabilities can not only increase ones’ sense of comradery, it can also reduce internalized stigma and lead to a stronger identity and a sense of pride. During his conference presentations, Dave reminded us people with disabilities will not truly be integrated into the community until they not only know who they are and are proud of who they are!

For more information about disability pride, identity, and community we recommend these resources as a starting point:

• Hingsburger, D. (1992). i to I: Self concept and people with developmental disabilities. Vida Publishing.
• Hingsburger, D. (2000). Power tools: Thoughts about power & control in service to people with developmental disabilities. Diverse City Press.
• Gill, Carol (1995). A psychological view of disability culture. Disability Studies Quarterly, 15(4), 16-19.
• Caldwell, J. (2011). Disability identity of leaders in the self-advocacy movement. Intellectual and Developmental Disabilities, 49(5), 315-326.
• Linton, S. (1998). Claiming disability, knowledge and identity. New York: New York University Press.
• Spassiani, N. A., & Friedman, C. (2014). Stigma: Barriers to culture and identity for people with intellectual disability. Inclusion, 2(4), 329-341.

6. A Resource For Lessons In Self-Esteem

By Vickie Overpeck

I had the honor of moderating the keynote presentation of David Hingsburger, well described by Carli Friedman in the previous takeaway, Disability Pride, Identity and Community. Mr. Hingsburger was an early “influencer” of mine when I read his book i to I, about respect and self-esteem, in 1990 while working in a large state institution in Texas. Being able to hear Dave speak again was the highlight of the conference for me.

After his presentation, I went up to thank him and shake his hand. Another woman was speaking to him when I approached the podium. She was a black woman. I overheard some of what she was telling Mr. Hingsburger. She said the discrimination and mistreatment delivered by the “community”, suffered by people with intellectual disabilities, was a feeling that people of her race were very familiar. For her children and others of her race, it had become common place for mothers and fathers to educated their children about what they might face in their communities and arm them with pride, self-esteem and respect for who they were. I recalled the James Brown album of the 1960’s, Say it Loud – I’m Black and I’m Proud.

So this was my “takeaway” from Dave Hingsburger’s presentation coupled with what I overheard from the woman. We can learn from what black families have done to prepare their children for life in the “real” world. Other minority families have also had to prepare their children, by arming them with self-esteem and pride in their heritage. It came to mind that mothers also often “arm” their daughters with self-esteem and confidence to face what girls and women often face in school and in the work place. Part of this is knowing who you are and owning it, being proud. Part of this is being able to identify with a movement, a civil rights movement of which you are a member and belong. Part of it is learning about others of the same movement who are remarkable and become heroes/heroines that you look to for inspiration.

Techniques used by these families, mothers and fathers, rights movement leaders can be resources for us, as supporters for people as they navigate the troubled waters of full participation in their communities. Many are fearful of the changes that are coming as sheltered workshops close and segregated day services dissolve. We must be mindful of how we support people, eyes wide open, to the reality of what they will face and how we can “arm” them while being the “refuge from the storm” Dave Hingsburger spoke so passionately about in Indianapolis.

7. Conference Connections

By Michael Clausen

The value of networking at our conference cannot be overstated. I was able to facilitate connections between organizations and people, and observed others happen organically. Having worked for an accredited provider for many years, I understand the value of being connected to other organizations who may be struggling with the same thing, or better yet, have overcome the same challenge. The culture of sharing among providers who share our values is seldom advertised and often occurs “behind the scenes,” but is critical to the success of organizations and ultimately, improves the quality of people’s lives.

When the organization I worked for was struggling to write a Basic Assurances® monitoring plan, an example was shared by a provider 1500 miles away. This example helped us conceptualize it, and later we excelled in this area enough where we were able to share our plan with others.

While nothing can compete with the connections you can establish in-person, CQL has created a Facebook E-Community. Members can interact about everything related to human services. This is a platform to share resources, ask questions, provide support, and identify solutions. After you select the hyperlink, click on the ‘Join’ button to become a member.

8. Flipping The Concept of Duty of Care

By Katherine Dunbar, CQL Vice President of Services and Systems Excellence

Dr. Jason Buckles, Executive Director of A Better Way of Living in New Mexico gave an enlightening presentation on “risk” versus “care” for people and the inherent “tension between safety and empowerment.” I attended this session because during accreditation reviews almost all agencies want clear answers for how to mitigate risk and limit liability. Dr. Buckles noted that liability and negligence start when you fail to discuss and document. It was clear that Dr. Buckles is passionate about this topic and certainly engaged his audience. He flips the concept of the “duty of care” by asking people if preventing “harm” (or risk) could actually lead to harm.

Dr. Buckles discussed “The Seven C’s” of risk/support decisions are:

1. Consideration
2. Consultation
3. Creativity
4. Compromise
5. Consent (informed)
6. (modeling) Calmness
7. (encouraging) Collaboration

Dr. Buckles stressed that when discussing risk that it is imperative to have conversations with people who disagree with you and are external to the situation. Each idea, no matter what it is, should be given careful consideration. We should also “constantly endeavor to improve the knowledge, understanding, and decision-making capacity” of people who receive support. To take risks, Dr. Buckles notes, people must give informed consent. However, one “does not need to know how to perform the surgery” to consent to a surgical procedure. In other words, oftentimes when human service providers support people with disabilities to take a risk, they’re held to higher standard than others. We do this, in part, out of our thinking that we owe people protection and safety. Dr. Buckles ended his presentation by encouraging agencies to support DSPs, check on progress, and to take an appreciative inquiry approach while stressing (and celebrating) partial successes, instead of noting “failures.”

9. Yes, and…

By Betsy Burns, CQL Quality Enhancement Specialist

Peter Leidy of Peter Leidy Consulting presented a keynote address titled ‘ACCEPT EVERY OFFER: A New Way of Working Together to build Community, Embrace Change, and Boost Morale.’ This session provided a wonderful takeaway of “Yes, and …” This concept and improvisational technique can be used as a team-building activity for brainstorming ideas, strengthening communication skills, resolving conflicts, and well, quite possibly being a catalyst for change.

We have all been to meetings or training sessions where people begin to share ideas, and inevitability someone says, “Oh, we have already tried that,” or “No, that won’t work because we tried that last year and it was a disaster!” The concept of “yes, and …” is an invaluable communication strategy that provides a creative avenue to expand thinking when looking for new and innovative ideas to promote change. The premise is to replace, “Yes, but …” with “Yes, and …,” therefore accepting what one has just said and to respond with something that may expand on that line of thinking.

Peter demonstrated the “Yes and …” technique with the participants of the group in his session by asking the group to share suggestions on how to offer ideas around someone who enjoys being around children, using sign language.

The group shared many thoughts within in a very short period of time by offering ideas like:

• connecting with a local library, “Yes, and…,”
• connecting with a Girl Scout Troop, “Yes, and….,”
• connecting with a teacher in a local school, and Yes, and….”

Resonating loud and clear is the very simple and thoughtful theme of “Yes, and …,” a collaborative way to listen and respond receptively to the ideas of others in a non-judgmental way that enables limitless opportunities for growth.

For more information about Peter Leidy please refer to his webpage: https://peterleidy.com/

10. “Be The Harbor, Not The Storm.”

By Denise Walsh, CQL Quality Enhancement Specialist

I attended two of Dave Hingsburger’s sessions and saw his keynote address. The main takeaway that stood out to me involves the importance of being valued in a relationship that demonstrates dignity, respect, and acceptance by others in society.

Dave emphasized that in order for people with intellectual and developmental disabilities to be accepted and respected by people in society, it must start with the relationship between the Direct Support Professional and the person with receiving services. If the staff values a person and treats them with dignity and respect, then society will also value that person. His quote that resonated with me, which I have already shared with my organization, is “be the harbor, not the storm.” Employees need to create and maintain a safe and welcoming environment free from abuse and neglect. People with intellectual and developmental disabilities are faced with abuse on a daily basis in society by others, so they shouldn’t experience this by staff where they live and work.