why I care about disability ministry

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This week's weekly round-up of links related disability ministry, which usually posts on Mondays, will run tomorrow instead. This post was begging to be written and posted first.

I began engaging in special needs ministry because I realized that the church was not rushing to or showing love to people with disabilities and their families. Not only are many churches ignoring the needs of this community, some churches are often outright rejecting individuals with special needs. Every new family with a disability arriving at our church has shared the story of at least one church that turned them away; one parent at our respite care event a couple weeks ago told me, "Our last church told us we weren't welcome there anymore." When my friend Mike, his wife, and his triplet sons - each with autism spectrum disorders - moved to St. Louis in 2002, he called 37 churches; all 37, upon hearing about his children's needs, told him that his family wouldn't be able to come to their church.

Praise God that Mike's family did find a church in St. Louis and that many churches are indeed stepping up to embrace these children, teens, and adults and their families. For those that aren't yet there, here are the facts that require a response from us as the body of Christ:
  • When parents learn of their unborn babies' diagnosis of Down syndrome prenatally, 92% choose to abort rather than welcome a son or daughter with Down syndrome into their families.[i]
  • When a couple has a child with autism or ADHD some research indicates the the rate of divorce is nearly twice as high as for parents whose children don’t have disabilities.[ii]
  • While the risk of divorce decreases after children turn eight for most couples, marriages with a child with autism have a continued higher rate of divorce in adolescence and early adulthood.[iii]
  • Some disability ministry leaders have estimated that 80-95% of people with disabilities are unchurched.[iv] While I can’t find any documented research to back that up, my experience in the disability community as an educator and researcher confirms that adults with disabilities are less likely to attend church than other adults (supported also by this study), as are families that include a child with a disability.
  • People with disabilities are less likely to attend religious services than nondisabled Americans.[v]
  • Recent research from Boston University indicates that people with autism are more likely to be atheists and more likely to reject organized religion in general.[vi] The parameters of that study didn’t explore why this trend exists, but it could be related to the church’s failure to show hospitality to and share the gospel with them.
  • As organizations like The Barna Group have studied other aspects of the intersection between the church and unreached people groups, little to no research is available about the welcome – or lack thereof – for people with disabilities within the body of Christ.
  • Furthermore, while it would be unacceptable to close the doors to the church to any group of people, this is no small group: About 54 million people in America (19% of the population) live with some level of disability, according to the U.S. Census Bureau in 2008, a group approximately the same size as the combined populations of Florida and California; 35 million Americans (12% of the population) have a severe disability.[vii] Nearly one in six children has a developmental disability.[viii]
If we love the gospel, then we can’t deny that it is not just for those who behave, walk, talk, and think like we do. The beauty of the gospel is that it is not dependent upon my ability or yours but rather on the love and faithfulness of Christ, who lived the sinless life we couldn’t live, died the sinner’s death we deserve, and rose from the dead to conquer sin and death that we may live with him forever. Just as the disciples in John 9:2 didn’t understand that disabilities aren’t caused by the sin of the person who is disabled or their parents, the church today also needs to hear Christ’s answer in John 9:3 that disability doesn’t disqualify people from membership but instead is one way that the works of God are displayed in this world.

God made me passionate about this before my body developed a mild degree of physical disability due to rheumatoid arthritis, but I am thankful that my present circumstances help me focus on the eternal glory of our God rather than the fleeting comforts of this world. I'm not paid by my church or anyone else to coordinate special needs ministry for pre-birth through high school and collaborate with the woman who coordinates the adult side of what we do. I’m just a stay-at-home mom to two preschoolers who cherishes the opportunity to spend herself on behalf of God for his people, to loosely paraphrase Isaiah 58:10.

Won't you join me?

[i] Mansfield, C., Hopfer, S., & Marteau, T. (1999). Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: A systematic literature review. Prenatal Diagnosis. 19; 808-812.
[ii] Wymbs, B. T., Pelham, W. E., Molina, B. S. G., Gnagy, E. M., Wilson, T, & Greenhouse, J. B. (2008). Rate and predictors of divorce among parents of youth with ADHD. Journal of Consulting and Clinical Psychology. 76(5); 735–744.
Hartley, S.L., Barker, E.T., Seltzer, M.M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology. 24(4); 449-57.
[iii] Hartley, S.L., Barker, E.T., Seltzer, M.M., Floyd, F., Greenberg, J., Orsmond, G., & Bolt, D. (2010). The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology. 24(4); 449-57.
[iv] McNair, Jeff: http://jeffmcnair.com/Ukrainenewspaperarticle.doc
The Christian Institute on Disability, quoted by Hsu, Al. (2008). Surprised by disability. Christianity Today. 52(10). Accessed at http://www.christianitytoday.com/ct/2008/october/15.100.html
[v] The National Organization on Disability. Religious Participation: Facts and Statistics. http://www.nod.org/religion/index.cfm
[vi] Caldwell-Harris, C., Murphy, C.F., Velasquez, T., & McNamara, P. (Unpublished). Religious Belief Systems of Persons with High Functioning Autism. Research paper from the Departments of Psychology and Neurology at Boston University. Available at http://csjarchive.cogsci.rpi.edu/proceedings/2011/papers/0782/paper0782.pdf
[viii] Boyle, C.A., Boulet, S. Schieve, L.A., Cohen, R.A., Blumberg, S.J., YEargin-Allsopp, M., Visser, S., & Kogan, M.D. (2011) Trends in the Prevalence of Developmental Disabilities in US Children, 1997–2008. Pediatrics. Accessed at http://pediatrics.aappublications.org/content/early/2011/05/19/peds.2010-2989.abstract?sid=ab290d14-2d60-411d-bf0c-00bb150716aa


 

Announcing...the Inclusion Fusion websummit! (and it's free!)

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Alternate title: Why I've been MIA lately

I love ministry conferences. I love the opportunity to connect with others who are passionate about serving God and his church in humility and truth, and I love the chance to learn from others. I don't love, though, having to figure out the logistics and travel and accommodations and cost and babysitters required for me to attend a conference.

That's why I'm so excited to share with you the upcoming Inclusion Fusion websummit, organized by Key Ministry and PajamaConference.com. I have had the privilege and honor of serving on the program team, so I can tell you first-hand what a unique and edifying event this will be.

And what makes it so exciting, apart from the speakers who I'll share below? Well,
  • it's free,
  • it's online so you can participate from any location with an internet connection,
  • each session will be available 24/7 during the three days of Inclusion Fusion (which are November 3, 4, and 5), so you can plan your watching time around your schedule (or, if you want to join together with your entire team to watch a session, you can plan around the schedule of your group),
  • it includes sessions designed specifically for parents and others specifically for ministry leaders (though many will apply to both groups),
  • and did I mention that it's free?
For more on the logistics of the conference, see my friend Steve's post here or register (for free!) here.

Our keynote address is from Chuck Swindoll, who has been a great friend and advocate of disability ministry for years and whose church has a thriving special needs ministry. The latest line-up of other speakers, as of October 8th is below...and I think you might know the second person listed (me!):
  • Jeremy Collins: Using Social Media in Special Needs Ministry
  • Shannon Dingle: Common Misperceptions About Disability Ministry and Disability, the Sanctity of Life and the Church
  • Barb Dittrich: Bathing in the Healing of Forgiveness
  • Amy Dolan: Customizing Your Curriculum
  • Ryan Edlind: Church and Mental Health…Bridging the Gap From a Leadership Perspective
  • Joe and Cindi Ferrini: The Unexpected Journey of Relationships-When Special Needs Change Our Course!
  • David Glover: The P.U.R.E. Ministry Project: What, When, Why and Where?
  • Steve Grcevich: Kids With “Issues”…The Mission Field Next Door
  • Rebecca Hamilton (with Katie Wetherbee): Got the Keys? Starting Your Ministry 
  • Harmony Hensley: Inclusive Ministry Environments
  • Jim Hukill: Renovate: Transforming a Disability Movement
  • Connie Hutchinson: The Road to Independence
  • Marie Kuch: To Be Announced
  • Rhonda Martin: Nurturing Spiritual Growth in Kids With Anxiety
  • Jeff McNair: Integration as a Core Value
  • Amanda Mooney: We know we should…but HOW?
  • Libby Peterson: Relational Respite-A “Go To Them” Theme
  • Jolene Philo: Ten Ways Churches Can Support Parents of Kids With Special Needs
  • Colleen Swindoll-Thompson: To Be Announced
  • Bob West: Where is My Heart?
  • Katie Wetherbee: How To Advocate For Your Child At Church
  • Laura Lee Wright: For Kingdom’s Sake
I do want to give you the heads up that this group includes a variety of different Christian denominations and traditions (including Southern Baptist, Roman Catholic, and Presbyterian, to name a few) and a variety of roles (with one or more of each of the following: church staff members, pastors, volunteers, parents, ministry consultants, non-profit leaders, authors, and child psychologists). I think you'll enjoy the benefit of such an approach, but it also means that you might not agree on all matters with each speaker. I know I won't, but I'm okay with that. Also, you can watch as many or as few sessions as you want, so you're not locked in to all the sessions if you're not interested in or in agreement with one or more of the sessions.

Finally, I would love your prayers for my two sessions, Disability, the Sanctity of Life, and the Church and Common Misconceptions about Special Needs Ministry. I am putting the final touches on them, while planning for knee surgery, scheduling a follow-up liver ultrasound to check on an issue I had six months ago, battling some insomnia issues, starting plans for our December 10 respite and our spring Joy Prom, and being a stay-at-home momma to my four-year-old artist and two-year-old climber (love my job caring for them!). Suffice it to say, I am tired, but God is good.

Even once the recordings for the sessions are fully edited and submitted, I would love for you to keep praying for the event and for the individuals who will join us for it (and hopefully you'll be among those!).

Special needs ministry weekly round-up! {10-10-11}

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Last week I shared about our church's recent respite care event, and this week and next I'll have a few posts about our churches' respite events that  our Access intern (who ROCKS!) researched this past summer. Kelsey has thanked me for letting her serve with us, but we are truly the ones who are blessed!

If you read no other link in my post today, let it be this one about the majesty and wonder of God's marvelous works in a Joni & Friends mission trip in which a young man with cerebral palsy and in a wheelchair served alongside his parents: Wheelchair clinic allows disabled son to serve, too

Great tips from Jenny Funderburke for ministering to kids who are hyperactive!

Has Down syndrome hurt us? This sweet post from a mother vulnerably shares her fears upon diagnosis and lessons she learned afterward, leading to these answers: no, Down syndrome hasn't hurt us, and yes, it is a life worth living.

Two boys are a Catholic high school: one black, one white; one with cerebral palsy and Asperger's syndrome, one without any disabilities. And God brought them together with compassion in this story.

And while I am willing to bring attention to our failures as a church to welcome people with disabilities, I love highlighting the successes too, like these:

That's all for this week. I hope you're having a great Monday!

What we'll be doing differently at our next church-based respite care event

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While our respite care event this past weekend went well, we'll be making some changes to improve our next one. In case you missed my previous posts, here they are:
Today's list of potential improvements isn't complete because our leadership team hasn't met yet to create our more comprehensive list. Based on our informal conversations and my own reflections, though, I can offer the start to that list. Next time, we'll...
  • ...bring carpet cleaner and paper towels. We had a puke incident on Saturday and discovered (a) cleaning supplies weren't easy to find at the church and (b) the napkins in our bathrooms are too thin for anything but drying hands.
  • ...provide a little more training on our policies for diaper changes and bathroom visits. I didn't cover this as well in our volunteer training as I should have. 
  • ...launch registration sooner. As we figured out the ins and outs of registration this time, we didn't get it up and running as soon as we would have liked. We'll change that next time.
  • ...get the word out more. We have several - mostly secular - groups who were willing to publicize the event for us, and we didn't utilize them as well as we could have. We're ramping that up for December 10.
  • ...get some freebies for families. We gave all of our families a little goodies bag with a stress ball, a CD of our children's ministry music, a mini-postcard invitation to our fall festival on October 29, and a brochure from the music therapist who helped us in the last hour of the event. I know we have connections in local restaurants and plan to offer Chick-fil-a freebie coupons and possibly a couple other gifts in the bag next time.
  • ...get some freebies for volunteers. Just like we would show love to our families with those types of coupons, we love to show appreciation to our volunteers. We gave each of them a little gift for serving with us this time, and I know we want to do a little something like that again on December 10. 
  • ...pass the torch. Right now my knee surgery is scheduled December 2nd*, and my surgeon says I can help with but not lead the December 10th event. I'll co-lead the planning of this event with two of my leadership team members, and then I'll turn them loose to run it. 
  • ...increase communication with the parents of teenage volunteers. I didn't do a great job of making sure the details of the event were clear for all of the parents of youth who volunteered. As a result, some of our less responsible but still incredibly passionate student helpers were MIA: they wanted to help, but Mom or Dad didn't know enough to get them there or to hold them accountable to follow through. To be able to train the next generation to serve well, I need to do a better job of partnering with their parents.
  • ...tighten up communication with other church staff. I serve at a large church in which most of our adult Sunday school classes are larger than the entire congregation of my last church (a small, rural church in Texas). For my old church, I had a key to the building, and I knew all of the other members. That's not the case at my current church, and I learned a lot about the differences in event planning/execution in a large vs. small church for this event. We have room to improve in our logistics, and we now know how to do that and who to talk to for each step in the process.
I know the other members of my team will have other good tips for future events, so this certainly isn't everything we can improve upon. It's a start, though, to move forward to our next one!

Next week I'll be posting about what we learned from other churches, based on research completed by our amazing intern. That research is what made this event as successful as it was.


~+~
*Note on the surgery, if you're curious:
It will be multiple procedures, but all can be done in one day via arthroscopic surgery so I should be walking (albeit with pain) that day and driving the next (as long as I'm not on pain pills). Why hold off until December 2? Well, my RA drugs inhibit my immune system, so I only have a one-week window in which surgery is safe during each seven-week IV cycle. We're hoping to reschedule for next Friday or the following one if the surgeon has an opening, and I would love your prayers for that!

Our recent church-based respite event: Roles, Layout, & Schedule

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I kicked off this respite-related series on Monday with the three questions you need to consider before launching church-based respite care events, and then I followed up yesterday with explanations and examples of safety measures you could use.

Today I'll share a little more about our specific event, and tomorrow I'll share some ideas for what we might do differently at our next event on December 10. And stay tuned next week for a series of posts based on the research our Access Ministry intern did this summer as she gathered information for us (and now YOU!) about 20+ church-based respite care events taking place around the country.

First, here are the nuts and bolts of our last event:
  • Day: Saturday 
  • Time: 4-7 pm
  • Food: Pizza and juice boxes or food brought from home (served at 5:15)
  • Location: Our church
  • Cost: $5 (might be free in the future but we haven't decided)
Next, volunteer information and training basics:
  • We asked one adult Sunday school class to commit to help us for this event (and we'll ask a different class for December), and we recruited from our high school Sunday school classes as well. Additionally, I identified some people who I knew already and asked to join us from beyond those two groups.
  • We initially planned to train volunteers on the Sunday prior to the event, but we shifted our plans to have training beginning at 3pm on the day of the event. (This did require a little extra work for us, because we had to collect background check forms in advance of training, whereas we could have collected them at training in our original plan.)
  • Some volunteers expressed an interest in helping in a specific way, and we were able to accommodate those requests.
One of our primary tools for volunteers, as well as our planning resource, was a two-side page with the layout of the physical space on one side and our schedule on the other:
Access Respite Map and Schedule

Because several families had to cancel the day before the event due to illness or unexpected out-of-town company, that file shows some more rooms closed that we had originally planned. Below is our original layout, before we made those changes:

Three notes about the layout:
  1. Instead of having a set schedule, we created several spaces that kids could rotate through with volunteers stationed at each exit so no child could escape. We did have picture cards we could use with the parents at check-in to create a more defined event schedule for those children who required that, but otherwise child-buddy pairs and siblings just utilized space based on their own interests. 
  2. I renamed the "low-functioning class," calling it "separate class" on the final version. While "low-functioning" is a helpful term in school settings, no person has a diminished function in the body of Christ, so we choose not to use that phrase if we can avoid it.
  3. To create this layout, I used the file that our church uses for fire exits and other building plan needs. I used a photo-editing program (for me, it was Photoshop Elements, but any program would do, even a basic one like Paint) to delete some parts that we didn't need and add dots and text.
In order to communicate the finer details of each role, I listed the roles in a document (found here - it's nothing fancy!) and cut them into strips. Then all I had to do was hand the appropriate slip to each volunteer. Here's a list of the roles we had and the wording I used to describe each role on the slip they received:
  • Registration: I didn't have a slip for this one, because I trained them separately. So that I could recruit some fantastic - but busy! - ladies to serve here and so that our other volunteers could be in place from the beginning, these volunteers only came for the beginning portion to check families in. Instead of a slip, these ladies were given the Access Respite Check-in Cheat Sheet.
  • Bathrooms: "Hang out in front of the bathrooms to assist buddies so no one was alone with a child in the restroom."
  • Door: "Hang out in front of your assigned door to downstairs so that no child goes through the door unattended. If a buddy-child pair uses your stairwell to go to the playground, please stand in the stairwell until the buddy & child have gone outside so that no adult is alone with a child."
  • Big room: "Help as needed. Stay in there so no one is alone with a child. Run the computer/movie."
  • Coloring/puzzle/play room: "Help as needed. Stay in there so no one is alone w/ a child. Clean as needed."
  • Music/game room: "Help as needed. Stay in there so no one is alone with a child. Clean up as needed."
  • Wii room: "Help as needed. Stay in there so no one is alone with a child. Clean up as needed."
  • Sensory room: "Help as needed. Stay in there so no one is alone with a child. Clean up as needed."
  • One-on-one buddy: "Enjoy the event with the child!" (Also, remember that we provide buddies with a notecard of child info in addition to this.)
  • Floater: "Help as needed. Rotate through areas."
  • Food: I didn't have a slip for this role - which was filled by the same volunteer who hung out in the elevator for us in the beginning - because I trained her myself prior to the event.
For all of the roles except one-on-one buddy, I included the note below so that they could use downtime wisely and not feel like it was wasted time:

If you find yourself alone, take time to pray for the event, these families, other families with special needs who are unchurched, and Access Ministry as a whole.

I didn't include leadership roles above, which included our med team, but hopefully this can provide you with some framework to start from.

~+~
Final notes: I know the level of detail found in this post won't translate perfectly to what you'll do at your church, given the layout of your facility, the size of your event, and the number of volunteers you use. However, I hope it can be helpful to give you some ideas to begin thinking about the details of an event for your church.

Here are two other posts you might find helpful about respite events (not from my blog, but from the blog of Jackie Mills-Fernald at McLean Bible Church):

Come back tomorrow for what we'll plan to do differently in December, and visit again next week to learn more about how 20+ other churches run their respite care events!