What Matters Most: Families, Disabilities, and Compelling Congregational Supports
Featured Speaker:
Erik Carter, Ph.D.
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theologyanddisability
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TheologyAndDisability 
Rev. Elizabeth "Betty" McManus 9:26 am on July 20, 2012 Permalink |
Erik – your presentation was compelling. I’m still struggling to wrap my brain around identifying markers for measurement of intangibles, but I’m looking forward to working with you on the development of a spiritual assessment tool! Thanks for all you do!
Christopher Phillips 8:24 am on July 23, 2012 Permalink |
A few thoughts from Eric’s Monday Presentation:
Eric is doing research to look at practices of faith and the importance of congregational supports with a focus on gifts rather than on deficits.
People with development disabilities are often not very known or understood.
Professionals sometimes wonder if it is it really their role to support people with disabilities in this dimension of their lives and many congregation leaders struggle to provide needed welcome and support.
Some background on the Youth and Families Flourishing Project:
6 million people have the label of developmental disability in the United States (approximately 3%).
30% of all families have a member of their immediate family or a relative who has a developmental disability.
Developmental disabilities cuts across every demographic group.
Although people with developmental disabilities have the right to attend public school, they do not necessarily have the right to worship on Sunday.
Members of this group may exhibit challenging behavior and the presence of those behaviors often impact the worship experience.
Using an assessment scale for positive strengths, the study works with individuals and families to identify strengths and gifts.
Important to focus on gifts- we often introduce people with disabilities based on their deficits and how we introduce people really matters.
Consider the difference:
1. Jake would like to attend your congregation, but has autism and will needs some people to sit with him all of the time.
2. Jake is a new member of your congregation, he’ll fit in well with the others in his youth group and is great at remembering names.
Help people see gifts first!
There is also a need to look at spirituality both within and without a congregation- both personal and private experiences.
What kind of supports do families need? In general physical accessibility is the least important need that families express. Consider other ways to support a family such as disability awareness, having an advocate in the congregation or sponsoring a support group.
Christine Guth 7:09 am on July 30, 2012 Permalink |
Here are notes from the Monday afternoon discussion led by Erik:
Erik is trying to provide data for the questions at intersection of faith and disability.
1. How do we identify and support what matters most about young people with disabilities. How do we ask questions that will allow person with full and rich life. When you ask those questions, you inevitable year about faith and friendship. We do not fit people into programs, but we
develop supports around people.
2 How do we support families well?
3. What does it look like to do these well?
4.What does it take to mobilize congregational leaders to action?
Congregation-wide disability awareness efforts – 76% of parents said this would be helpful. Top area of interest. For the population we surveyed, the physical barriers may not be the biggest.
Stares not stairs.
Group homes are notoriously short staffed. Transportation is biggest deficit. People want to come to our events, but Sunday events fall apart for lack of transportation. Even if you have well-meaning church members, can be barriers – requirements for background check. Have to jump through hoops.
These were young people, mostly able-bodied. Transportation still an issue for 1/4 families.
Someone coming to the home picking up the siblings. Helping them get to church. Helped get them in the car, took into Sunday school. Single mom with 3 kids, one with a disability.
I was surprised that only 6 percent of churches were doing this well. (disability awareness). We started a disability awareness committee in church. Leadership of the church were most influential in providing education and awareness. We made some good progress at educating people. But dynamic occurred that people routed all their problems to disability committee. We phased out the committee so each aspect of church would take responsibility for inclusion. We have brought the larger disability community into the church. Disability community Open Mike – 100 people with disabilities come to share thoughts, writings, poetry, dance, etc. I was disappointed that few from congregation came. The marketing is hard. Congregation thinks it would be depressing.
Steve: Moving beyond informational awareness. We instruct our consultants to focus on life-transformational presentations. WE are not just reaching the mind, but reaching the heart. Storytelling, testimonies, and the positives from people with disabilities and parents. Emphasis on positive. Accenting the capacities of a congregation, not the deficits.
Creating a culture of inclusion. We had triplets with autism in congregation. We needed to do something. Presbyterian denomination has disability awareness Sunday. We compile a resource packet for congregations. Our church has a disability awareness Sunday. We do have a welcoming inclusive congregation. But new people need to still see this is a concern. Talk about our language. We started to partner with group homes, network of homes. One of young men joined the church. He is a master greeter. ” My job is to ruin your bad day”. We have once a month Rejoicing Spirits. Gets people in the door. It is a way of educating our congregation.
Our pastors speak from the pulpit. People don’t stare at someone’s unusual behavior. There is something mentioned in the bulletin pretty continuously.
Jenny: I did a survey of congregational leaders:
Felt they were welcoming. Felt congregations were inclusive and had adequate programs. Most did not support people with disabilities separate worship service.
Did not receive training about disabilities in training. Not sure about denomination resources. Most had not used any denominational resources. Agreed that religious training about inclusion would benefit congregation — 97 %. Recognized problem of transportation. I was surprised so many churches did not know if denomination provided resources.
Clergy had little knowledge of disability services and little training.
A church did not want to do an information presentation. Decided to host an annual arts show, done by people with disabilities in their congregation and beyond. Art was in congregation. People viewed art as part of service. Artist talked about art. Later-Dialogue about what are we doing well, what could we do better.
Time for people with disabilities and families to tell their stories. Let the person with a disability speak from him/herself unless they are completely unable to do so. People with physical disabilities, mental health disabilities, need opportunity to tell who they are. “My church keeps thinking my husband is my caretaker” – yes he does take good care of me and I take good care of him too.
Extravagant welcome – happens if top person says it is our ethos. I am counting not on a volunteer who signs up, I am counting on a friend.
We have had special needs weekends – I did not want it to be disability on parade – it was the one time a year to showcase the strengths of people with disabilities. Must really empower families.
High school reunion effect – they have shared history, but people are shuffled around. Friendship is shelved – disability awareness events are opportunities for people to bring people together.
57 percent of youth had never participated in sacraments. – large percentage.
Many of you have been involved in disability awareness on org level? What are smaller, subtle benefits as you do that work?
Conversion. Everyone wants conversion for people of God. As people with disabilities are involved in life of faith communities, Spirit will move. Supporting families and encourage them to make needs known. It takes a lot of courage, raising awareness.
Janice Duvall: We are 22 years after ADA – Church was not part of that movement. What made the civil rights movement was the fact that it was born out of the church. The Church was ABSENT largely from disability rights movement. We don’t have a Dr. King to put our message forth. Society has to do a work. We must do work I get frustrated. We did not do a work that now we have to do. Church can have great impact on getting that message forward.
Churches: What all have you done to advocate for justice? I challenge them to stop complaining about Springfield, and take action.
More we can do to bridge disability svc system with faith community. Many in social service world are uncomfortable talking about faith. With disability open mic we have been having, brought some people into church for first time in years. First time of welcome in a church. Our church worked with org called Erasing the Distance, a theater company. Performs the stories of members. Started a dialogue with congregation. We did customized show from stories of people from within congregation. Lead minister shared her story.
We can listen someone into existence. Power of listening to stories.
Erik Carter: We bridged these themes at my Wisconsin church – declared that we were a welcoming congregation, but many people were skeptical. We found that 1 out of 3 families had left congregations for lack of welcome. When a family expressed an interest in congregation, someone would invite parent out for coffee. We sat down and heard their story. Learn more about the family and their child. Ask, what would it look like if we were going to make worship day best day of the week. Our job was to go back to commissions, teachers, etc., to try to bring some of these things into being. We would always conclude, “We are going to mess this up, but we’re going to give it our best.”
We don’t have to know everything, just know how to connect families to resources. A resource center in congregation in a congregation can provide information.
Erik: So many inclusive ministries for elementary school. More difficult for folks in middle and high school. Then as adults, it falls off to nothing. Great needs there. Don’t see a lot of congregations making an effort for adults. Seniors with developmental disabilities live in all of our communities.
Sustainability: (Steve) – monthly or periodic bible study model. May be non-inclusive but something a congregation can do. Music, talents of congregation. A variety of people can participate. Respite is a key area to focus on. To offer respite, must ask how to sustain. I don’t have a lot of wisdom. Hoping to help congregations share best practices.
There are few stories out there of how a congregation moved from here to there. How do we identify congregations that are doing well. If program is dependent on one person, program goes away when person leaves or gets burned out.
Ryan: parish I was in was doing bible study, more than that. Those who pioneered it had a personal connection with these individuals. A Catholic church in a small town. One person got chauffeur license to be able to pick up people in bus. Allowed individuals to form community. Found belonging in that community. I would see them come to Mass on weekends. Special Olympics. 30 individuals with disabilities, with facilitating role played by volunteers from congregation.
Erik: in schools, when things are set up as stand-alone program for people with disabilities, they program comes and goes, depending on leaders. When program is inclusive, that all in school are encountering people with disabilities, becomes more self-sustaining. If embedded in what everyone does, people are known, it is people you know, easier to get volunteers. Peers are not the ones who question whether we should include. It is the adults who struggle it rather than the kids.
The next generations are going to be more comfortable with this.
I see a lot of people who are hurting at church. I see people who are scared if they are going to miss mass. I see a lot of stressed people in church. Ambivalence – people who need an hour for ME. Need to get away. The people who are still in church, indicative that they have a lot of stress in their own lives.
Let us focus on how we welcome well, then these are the same whether or not person has a disability. People with disabilities are made to feel like we are so needy. We are not helpless. Lady saw I came in taxi – offered a ride. Made to feel helpless, that they can’t take care of themselves.
Question – ask what makes your child shine. Here are the gifts the child has to bring.
Website Missouri Family
Success in telling your story webinar story development worksheet. Can help a family tell story in a positive way. http://www.mofamilytofamily.org
Scale of positive psychology: looks at what helps people thrive. Ask parents to say if this is really like your child. When we interview we will ask to expand on this.
My field is very deficit minded. Looking at remediation. We wanted to abandon some of our label. Call someone – “profoundly happy.”
ncpd.org has good mental health resources.
Christopher Phillips 12:14 pm on August 6, 2012 Permalink |
Eric has graciously made his slides from his session available at http://www.slideshare.net/shercarter/what-matters-most-helping-youth-with-disabilities-and-their-families-flourish
Rev. lloyd blevins 11:19 pm on August 31, 2012 Permalink |
my name is Reverend Lloyd Blevins I am Baptist. I have a physical disability and I feel called to the pastorate I’m also in an adjunct professor at a Bible college in North Carolina, this form of ministry employment have been able to find. I’m unsure of God is calling me to souly work with disabilities. I was wondering if they were any assistance are pastors in my situation finding employment. I’ve yet to find a Christian organization that is willing to advocate for pastors who just happen to have a disability. I was also wondering if there were any internships available Christian groups that stress inclusiveness in Christian congregation? You may contact lloydblev3@gmail .com