Prenatal testing is changing your congregation and the population of individuals with special needs. But before the wave hits you, I want to help you get prepared.
Why should you listen to me? In 2010, backed by McLean Bible Church and its renowned disability ministry, we opened Jill’s House. God has been amazing and, already, no one in the world provides more overnight respite to families raising children with intellectual disabilities than we do.
But the people who showed up – and those who didn’t show up – surprised us. So, from our position on the front lines, I want to let you know what your church can expect so that you can do something about it.
Ministries within the church change based on needs and wants. For example, more churches have ESL classes, while fewer have sewing circles. Your church may have closed its bookstore and library but has since opened a ministry for people wrestling with porn and sexual identity. More churches are podcasting and fewer are distributing cassettes (though my 2002 Honda Accord and I still rock some vintage sermons from 1996).
When we think of people with special needs, our minds often dance with pictures of happy children with Down syndrome. Yet, in our day and age, that’s a misleading picture that will not equip us for effective ministry. Here’s why:
Fewer people with Down syndrome
First, the majority of families that learn that they’re having a child with Down syndrome no longer bring those kids to term. Tragically, they abort. Prenatal testing has become a part of routine care for expecting mothers. These tests can be done at 10 weeks. When a mom receives the report that her unborn child has Down syndrome, she faces a choice: prepare for the child with a disability she seldom understands or abort.
A hyperbolic friend recently told me, “The only people who have kids with Down syndrome are Christians and poor people.” Overstated? Sure. On the right track? Sadly, yes. If you are a baby conceived with Down syndrome, you are probably aborted.
So there are fewer people with intellectual disabilities now, right? No.
More people with autism
Second, the number of children diagnosed with autism spectrum disorder has increased by 30 percent over the last two years. In March 2014, the Center for Disease Control and Prevention released new data on the prevalence of autism in the United States. The study identified one in 68 children as having autism, a drastic change from the 2012 statistic indicating one in 88 children were affected.
This combination of prenatal testing and the increase in autism diagnoses is quickly changing the disability community in America. A survey of the kids we serve at Jill’s House reflects that change. When our ministry opened, we thought we’d mostly have people with Down syndrome and a handful of others. So we staffed thinking of these higher-functioning kids. We were mistaken.
Of the children we serve, more than 50 percent have autism, 20 percent have Down syndrome, 20 percent have other diagnoses such as a brain injury or cerebral palsy, and 10 percent have other chromosomal abnormalities. The children with autism require a lot more care. Their families come to us much wearier than other families due to the frequent meltdowns and their kids’ struggles to communicate.
In our work with this population, we’ve learned that parents raising children with autism are 60 percent more stressed than the rest of the population. Their divorce rates are 80 percent higher. Their child’s antisocial behaviors and limited ability to communicate becomes a strain on the whole family. Parents sleep less, feel isolated, and sense a loss of control. Marriages crumble and siblings feel neglected. These families need our support.
It slowly dawned on us that, in initially designing our ministry for higher-functioning children, we had brought a knife to a gunfight.
Ministering to families affected by autism
If the church wants to support people and families affected by disability, it needs to create ministries suited for the next generation of people with disabilities. The gunfight will be on your church’s doorstep soon. But good news: In the four years since Jill’s House opened, we’ve learned a lot and designed amazing programs that bring God’s Kingdom to families affected by severe intellectual disabilities. God has given us some great weapons!
Jill’s House now serves more than 500 families, primarily here at our center outside of Washington, D.C., but increasingly through our programs in Colorado Springs, Los Angeles, Austin and elsewhere.
Here are some comments from the families we serve around the country:
“Jill’s House saved our lives. When I think about what would have happened to us without Jill’s House, I shudder.”
“Jill's House is a blessing beyond belief. It’s nice to have a weekend with fewer responsibilities, without tube feedings and diaper changes and to have someone else do the bathing and lifting. I love my child, but seeing his face light up when we pull up to Jill's House makes me feel like the weekend is as good for his soul as it is for mine. Thank you!”
“The respite time that Jill's House allows my husband and I to have is irreplaceable. The peace of mind it gives us is indescribable.”
“Our son is 8 years old, and this is the first time that I have ever trusted anyone to keep him . . . much less overnight. What a gift. You have refilled my pitcher so that I have something to pour out to others now. THANK YOU!”
What are we doing? We give families a night or two off each month. Jill’s House provides long stretches of respite, with most stays giving parents more than 40 consecutive hours of “off duty.” These periods of respite involve keeping children at Jill’s House overnight so that parents can catch up on sleep and re-engage socially. We do this so that the physical rest we give will point to the true spiritual rest that can only come from Jesus.
Bringing this disabilities ministries to your community
God has allowed us to become some of the experts, and we’re excited to pray with you about ways to bring this ministry to your community. We’d also love to have a team of 10 to 20 volunteers from your church come on our weekend mission trip.
It’s our privilege to serve these incredible parents by caring for their children in Jesus’ name. God has not given us the power to heal intellectual disability, but he has given us the resources we need to provide this life-changing service to families. As we wait for God to restore every mind and body, we will keep working until every family affected by disability—whether Down syndrome or autism—has respite within reach and access to a church that embraces them.