Wednesday, May 18, 2016

When Graduation SHRINKS Rather than EXPANDS a Young Person's World


Spring is here in all it's glory and the greens seem more vibrant to me than ever before. I hope you're seeing opportunities to soak up the refreshment of this new season!

Our daughter Carly turned 18 years old this past weekend. And she'll graduate from high school in just three weeks. For Carly this is a dramatically new 'season' and you might be surprised that there are some very unsettling things about this for her dad and me—things that are causing us some grief. I hope you won't mind that I share some personal reflections about it here because I believe God has something to say about this to each and every one who is reading today. 

As other students head off to college, explore new jobs or take a 'gap' year to discover their true passions, Carly will begin a transition program a few miles from home in a building filled with several other young adults who, like her, experience significant developmental disabilities. While there will be plenty of important and enjoyable activities, a skilled and caring staff, and new friends among her classmates, there will be no typical students in that building. None. Unlike high school where Carly participated in the mainstream choir class and walked halls with typical teens, she will now be more isolated from 'normal' society than she has ever been before. Occasional school outings to places like the grocery store (to learn money skills), some family activities and church attendance will be the extent of her exposure the 'outside' world.


Typical high school graduates are seeing the world open up before them; opportunities and relationships are blossoming. But for Carly, becoming an adult and finishing high school means that life will be changing in very different ways. In contrast to Carly's peer experiences, her world is in high risk of shrinking. Unless somebody thinks creatively and takes initiative on her behalf, Carly's opportunities and relationships will immediately start narrowing after her last day of high school.

Carly is highly social. Yet she is fully dependent on others to bring her places and help translate her efforts to communicate and engage with others. Her social connections will continue to narrow unless her caregivers, church and community are intentional about optimizing connectedness for her. Carly also has gifts to share with her church and community. Yet she is fully dependent on others to make room for her and assist her in plugging in. Unfortunately, I see a world that is too naïve to notice and too busy to join us in exploring and embracing the possibilities. So I'm praying for a culture change. I'm also praying that God would give me fresh energy and vision to see the opportunities for Carly (and others like her) and show me how to facilitate connections and belonging for her in a world that doesn't really understand what God has said:

“Those parts of the body that seem to be weaker are indispensable, and the parts we think are less honorable we treat with special honor." 1 Corinthians 12:22-23  
"God has given each of you a gift from his great variety of spiritual gifts. Use them well to serve one another." 1 Peter 4:10  
"Jesus said, 'Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these'" Matthew 19:14

How about you?


Have you noticed any adults in your congregation who have disabilities? If you have, you might praise God for the caregiver or group home staff who have been willing and energized enough to initiate that outing! You can greet these friends — BOTH the caregiver and the resident. You can thank group home staff for their supportiveness. You can greet these friends and ask questions about their day as you would with any other friend. The few moments you spend chatting with them may be among the very few 'outside world' interactions they have all week.

How can you help adults with special needs in your congregation find ways to serve and increase their sense of belonging in the community? The church is not complete without these friends. More than just being friendly with each other, we must think of each other as ministry partners and invest in helping each other share in the life of the church and in life with Christ.

Does it cross your mind that there are numerous adults in your community who are invisible to you? Perhaps they are there and you just aren't paying attention. Perhaps they are not there because nobody has made a place for them. There are a range of obstacles that keep people with special needs from attending church. Although building accessibility and transportation can be challenges, the more frequent issue is emotional. None of us wants to keep going where we aren't noticed, cared about or feel like we belong.



Tuesday, April 26, 2016

Who gets to decide whether my daughter's life is worth fighting for?

I heard some alarming but empowering news last week during a meeting of the Twin Cities Disability Ministry Connection. Prenatal Partners for Life founder Mary Kellett explained the dangers and opportunities involved with healthcare policies that threaten the very lives of people like my daughter Carly.

You see, Carly has Angelman Syndrome so some people believe her to be a burden on society. Because she is cognitively and developmentally challenged, her life is considered by some to have less value than mine. While I've been well aware of this fact, I was rather naive about how that could impact the care she receives when she is hospitalized. But then I read Bella's Gift by Rick and Karen Santorum earlier this year. And then I heard Mary Kellett talk about how her son died. And WHY he died. Bear with me while I try to explain the issue here.

Many hospitals have policies granting themselves rights to decide when it is time to discontinue all treatments and “allow” a patient to die. Regardless of a patient or family’s right to make their own healthcare decisions, physicians and hospitals are being given the right to make “medical futility” decisions based on their own judgments about the value or quality of patients’ lives rather than the efficacy of specific treatments or therapies available. “These policies and laws have been crafted to shield physicians and hospitals from legal liability for hastening patients’ deaths,” according to the Human Life Alliance (HLA).

It is not just people with disabilities or special needs who are at risk.  Patients who have experienced serious medical crisis after things like gunshot wounds or motor vehicle accidents have also become vulnerable to the dangers of these policies. There are numerous cases reported where medical staff focused on the quality of a patient's life if he/she did recover instead of focusing on treatments and surgeries that would foster healing and recovery.

The HLA cautions, “before you or a loved one are admitted to any hospital, ask for a copy of the hospital’s ‘medical futility policy’” so that you are not caught unaware and unprepared.

Mary Kellett shares her powerful personal story about how these policies tragically impacted her family. You can read Mary’s testimony before the Minnesota legislature about Minnesota Senate bill SF2238, titled “Hospital Futility Policy Disclosure.” Although the bill passed the house and senate in 2012, it was voted down by the Governor at that time.

Let’s pray that bill will be successfully reintroduced in a future session!

In addition to asking to see a provider's policy, Mary encourages families, "you can invite your pastor or priest to attend a Care Coordination Meeting when significant life and care decisions are in the balance." Their presence gives a family comfort and confidence while conveying a powerful message about how the family values life as they advocate for a loved one.

To learn more about prolife healthcare issues, look for more information at the Human Life Alliance  and Hope Network.


Wednesday, March 9, 2016

Inclusion at Church Makes News in Minnesota

A news story aired last week under the headline: "St. Paul church designed to welcome those with disabilities."  This was a very important story that Walk Right In Ministries had the privilege to participate in along with the Twin Cities Disability Ministry Connection. FOX9 News dedicated just shy of 6 minutes for this feature story reported by Amy Hockert. Folks, SIX MINUTES of air time is a huge investment and this was not a simple story to tell. 

If you haven't seen it yet, please watch now then share this link on Facebook and Twitter: http://www.fox9.com/news/99791845-story 


This story has stirred conversation and passion. Over the last week since it aired, I've watched Facebook and my email light up about the tremendous needs, opportunities, failures and successes of the Church as it relates to special needs ministry. It is tremendously gratifying to see progress! Nonetheless, typical churches struggle to serve those leading atypical lives. Typical churches are scared, intimidated or apathetic and making very little effort at all. Though some churches try to be kind to people with special needs, the typical church today is still not engagingly inclusive. As our friend John Knight of Desiring God exhorted the church in his blog last week, "Let's not be typical!"  

What can YOU do?
Watch this news story.
SEE with new eyes and ENGAGE with the people around you who live with challenges.
PRAY that the heart and response of God's Church will radically change — embracing and including all those who have disabilities.
TALK to your pastors; help others see how very highly God values the "weaker" parts of his Body and expects us to engage their gifts in the life of the church just as we do with any other member.
POST this video link on Facebook with your personal note of encouragement to watch it: http://www.fox9.com/news/99791845-story 
WRITE to Amy Hockert at programming9@foxtv.com and thank her for telling stories that help people with disabilities!


Let our enduring message be hope. Let our eyes remain fixed on Christ. Let us not grow weary doing good.

Thank you for letting your own life speak and display the Gospel today.

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