May 2008


Yesterday, I wrote about a childwho was banned from attending a Catholic church.  Later that day, I realized that this was a large young man whom the church could not physically control.  I still don’t know the details of this situation.  In light of the fact that I don’t know the particular charges regarding the family or the local congregation, there are several things that could be in play.

First, it could be that the parents in their love for their child with disabilities may want to protect him to the point that they have not been emotionally prepared to provide him with the disciplines needed.  Second, the child may have received good discipline but his disability may prevent him from responding appropriately. 

The third possibility is that this local congregation is not prepared to handle people with disabilities, especially if specialized care is required.  This is a broader issue that I believe needs to be addressed. 

In the past, those of us who minister within the disability community have found that the Church is a caring and giving group of people who desire to do the best for the people they serve.  However, we have also found that the Church has not done a very good in ministering to people with disabilities.  This is not because the Church does not care.  It is because they don’t know how. 

The Special Gathering is a ministry within the mentally challenged community.  We are a specialized ministry whose primary mission is to evangelize and disciple people who are developmentally disabled.  However, we aren’t blind to the misconceptions that are sometimes housed within local congregations. 

Our choirs that go into churches, hoping to educate the congregants to the spiritual needs of people who are mentally challenged.  The Special Gathering Weblog was formed with a desire to help inform the younger leadership of the church world with the challenges and joys of ministering to people with disabilities.  We invite youth groups and church leaders and pastors to join us in a missions outreach weekend during Memorial Day weekend at Camp Agape. 

Every church family has been faced with the uncomfortable situation of dealing with a child or adult with disabililities.  It is uncomfortable because there is no training given in our seminaries or Bible schools that teaches how to effectively minister to persons who are developmentally disabled.  Often, the leadership of a local congregation doesn’t even consider the possibility of seeking help until they are slapped in the face by a family who arrives with a need.  At that point, it’s too late.  The church has no idea what the solution should be.

I sit here today, understanding the limitations. I feel frustrated. There is too much to write for one column.  I can only skim across the surface, introducing the problem.  Yet, help is housed within the Church. 

In an overly simplistic answer, love is the key.  Love will motive local church leaders to root out an answer.  Love will force us to redeem the best for everyone, even those with disabilities.  What form will that love take?  What have been your answers? 

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On Monday, I received this in my e-mail:

Mom says teacher let classmates vote autistic son out of class

By Colleen Wixon
Scripps Treasure Coast Newspapers

May 25 2008, 2:31 PM EDT

PORT ST. LUCIE — Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.
You may want to view the entire article from the Sun Sentinel .

Even worse,  Ekklesia Weblog recorded on May 30, 2008 that a child with autism was banned from attending The Roman Catholic Church of St. Joseph in Bertha, Minnosota, because of his behaviors.  

The reason I was interested in these articles was because of a lack of sensitivity that appears to exist among a few school teachers–and worse in the church–in regard to those with disabilities.  I know of one school in another state that each Friday voted someone to be Retard of the Week.  The contest was promoted and conducted by the Friday lunchroom teacher who monitored the students on that day.  While this school was a private institution and there were no mentally challenged students enrolled, this was a way of humiliating and punishing one student each week.   

Another teacher realized what was happening and quickly jumped into the situation attempting to put a stop to the practice.  She also began a rigorous effort to educate the students and teachers regarding who persons with developmental disabilities are.  She called us and asked for our help.  Of course, we were happy to have one of our choirs come and sing.  During an emotional chapel service, our choir sang and then shared openly the sorrow that has followed them during their lives because of their disability.

Some folks are disabled because of their own hurtful actions.  They got drunk on graduation night and ended up in a car accident.  They killed brain cells with alcohol.  They are addicted to drugs.  They eat themselves into a life of diabetes.  Smoking leads to lung cancer and heart disease.  Perhaps inappropriate sexual behaviors or other life choices are followed by a life of disabilities.

But the people who are served in The Special Gathering did nothing to merit their disability.  They are truly victims.  Most babies born with intellectual inabilities suffer from an unfortunate gene pool arrangement.  Crack babies and children born with alcohol fetal syndrome are the victims of their mother’s harmful actions, not their own lapse of good judgement.  There are no medical solutions which explain why small children begin to display the symptoms of autism. 

Special Gathering is a ministry within the mentally challenged community.  We minister to people who are developmentally disabled.  We do classic ministry, evangelism and discipleship.  We want our times together to be a safe haven from the harsh realities that these victim people struggle with each day of their lives.  While society endeavors to be politically correct about almost every disability, it’s become okay to throw around the word, retard. 

We purposely talk about our disabilities and the discriminations that are apparent.  In this open communication we desire to provide a place of healing from the sting of societal’s indifference. 

Have you found that speaking openly helps your members?  What are some of the other things that you do which seem to help heal the wounds of discrimination?

On Sunday evening at Camp Agape, we had a bread and cup service.  Each year, the members of several programs of Special Gathering gather for a spiritual retreat in Vero Beach at Life for Youth Camp during Memorial Day weekend.  This year we had about 220 people who attended from seven of our programs.  People came from as far south as Port St. Lucie and as far north as Jacksonville. 

Special Gathering is a ministry within the mentally challenged community.  We exist to do classic ministry, discipleship and evangelism.  This is our purpose and our mission.  Camp Agape is a set-aside time to get into the skin of our members and for our members to get to know each other. 

Each day we eat our meals together.  We sleep in the same cabins.  We play games, do crafts and slide down the waterslides.  The highlight of the weekend is the bread and cup service.  Here, we remember the sacrifice of the Lord Jesus.  We also want to embrace the time of fellowship that this meal represents. 

We served the bread wafers and the small cups of grape juice in two lines. Each person was given the invitation, “If you are a friend of Jesus, come.”  During the mingling in the aisles as people wait for their turns, there is a stirring of the love the Lord has for us shown by the fact that he would come to die for the bad things we do.

When The Twins (two young women in their early 20’s) came to me to be served, I realized that this was the first time in their lives they would be served the wafer and the cup.  I gave the bread to Ariel with the explanation, “This is a small piece of bread.  Take and eat it.  Jesus said that this was to be done to remember that his body was broken for us.”  I explained the cup in a similar way.  Ariel solemnly took the wafer and small cup.  She ate and drank it.

Then it was Clara’s turn.  She is blind.  I placed the wafer in her hand and explained.  “This is a small piece of bread.  Jesus said that we are to eat the bread to remember that his body was broken for us.”

Clara felt the bread with her other hand.  “Jesus said that?  Wow!” she said.  Somehow her simple exclamation did something new in my spirit.  The wonder of his sacrifice was magnified as I encountered anew the privilege his sacrifice affords us, giving us access to the Father.  My heart exploded with joy.

I gave Clara the cup and my feeble explanation.  Clara took the cup and said, “Wow!  This is for me?  Wow!”  By now I was weeping.  How can a simple “Wow” renew and even transform my understanding of Jesus’ sacrifice?  I have no idea. But I was acutely aware that access to the heartbeat of God is mine.  What more can be said but Wow?

As Clara’s simple exclamation made my heart sing, how has God opened your eyes to spiritual truths by the actions or reactions of your members? 

All day Sunday, Mark yelled at everyone he saw, “I have friends.”  Mark is about 16 years old.  He is the son of two prominent advocates for persons with developmental disabilities.  His father has appeared before Congress to advocate for the needs of people who are mentally challenged, especially for those with symptoms of autism spectrum. 

He has been mainstreamed in every part of his life.  For the most part, this has worked well for Mark and for the people who work with him.  However, it seems one thing has been missing for this bright and articulate young man–friends. 

His youth group leader has been involved with Special Gathering, a ministry within the mentally challenged community, for all of her teenage and adult life and she understands Mark.  When she and her husband found out that Mark was coming to Camp Agape, they were thrilled.  Camp Agape is an extension of Special Gathering where seven of our programs come together during Memorial Day weekend for a spiritual retreat.  As the weekend progressed, they became even more excited Mark. 

He is extremely energetic.  Mark literally bounces from place to place with his arms in the air, waving enthusiastically at everything and everyone.  During worship he sat quietly and was appropriate during meal times; but once outside, he is a ball of excited, spontaneous energy. 

“This makes me so happy to see Mark being able to be himself,” his youth group leader said as we rode through the campgrounds in her golf cart.  (Her responsibility is to do hour and half-hour checks of the women at Camp Agape.)  I was hitching a ride with her as we passed Mark bouncing from the lunchroom to his cabin.  “I wonder if this is the first time that Mark has been able to let go and not be told to sit down, stop running and bouncing, and be appropriate,” she said.  Tears formed in both of our eyes.

Of course, there is a need to teach every child what is socially appropriate behavior.  No child should be allowed to go without training.  But imagine never being allowed to let your child be the child he is.  My son was a climber.  If we had any trees growing in our neighborhood, they would’ve been his haven. 

But we lived two blocks from the ocean. All the coconut palms had been killed by a heavy freeze about five years before we moved here.  There were only palm trees that grew straight and tall.  Therefore, he was allowed to climb the walls and the door sills of our house.  He would climb the door entry to the kitchen and hang out as I cooked.  Occasionally, he was allowed to climb on the roof.  I can’t imagine my son not being allowed to climb. 

But for Mark, it wasn’t the bouncing that made him happy.  It was the acceptance.  Mike, John and Eddie became his friends.  Norm, Linda and Sam gave him acceptance and encouragement.  As he rushed to his mother, after getting off the bus, I could hear him.  “Mom, I have friends now.” 

Camp Agape was a success.

What are some ways that you encourage your members to be themselves? Have you seen that friendships are made in your program?

Four hours ago, I arrived home from Camp Agape. I’ve taken the time to store and rearrange all our supplies for next year.  I’ve removed the batteries our of the walkie-talkies and cleaned out the bleach bottles.  I’m tired, dirty and sweaty, but I wanted to put down my thoughts as they are fresh in my heart.  Camp Agape is an extension of The Special Gathering, a ministry within the mentally challenged community.  Our mission is to evangelize and disciple people with developmental disabilities.  We aren’t a camping ministry, like some of companion ministries are.  Yet, we take four days out of each year to get away on a spiritual retreat with our members.

On days like this, I am painfully aware that there are times that I forget the wonder of what we do.  The tasks become too hard or even worse, mundane and lackluster.  The problems overwhelm the spirit.  The concerns for safety rob your sleep.  But spending days with our member always refreshes the joy.

Camp Agape is the most amazing, miserable, joyful, sorrowful time in the year.  ( think I said that before but it is worth repeating.) The Twins–as they have become known in our Melbourne program–are 22 years old.  Clara and Ariel were never taken to church or allowed to go anywhere except school for the first 21 years of their life. 

They were removed from their parents’ home after they graduated from high school.  The Twins were put into the care of foster parents.  The wife gave up her position as an special education school teacher to be able to have them live in her home.  She and her husband have become their true mother and father.

The Twins are extremely physically involved and require one-on-one care.  Therefore, they are automatically disqualified from attending Camp Agape.  We is not geared to give that level of personal care. 

However, our volunteers rebelled and insisted that The Twins should go and they would pick up the slack.  First Church of God of Vero provided a grant for a  personal caregiver.  Early Friday morning, The Twins were packed and ready for Camp Agape because of the love and concern of the church community.  This would be their first vacation in a lifetime and a great adventure. 

Our weekend was blessed because of Clara’s ear-to-ear grins.  We cherished Ariel’s smiles like fine jewels.  We almost got tired of hearing their continuing thank yous.  Their caregiver, Mary Buchman, was amazing, going far beyond the call of duty.  She wanted them to have four-days they would never forget.  I believe it happened. 

Even greater, The Twins helped to provide us with a weekend that we would never forget. I know that anyone who encountered them will never forget their Four Days of Joy.  They did the crafts and hugged the cheap rubbery banners to their hearts.  The banners proclaimed, “Jesus loves Clara” and “Jesus loves Ariel.”  They sat quietly at the picnic tables and felt the wind blowing their hair.  They giggled gleefully their heads bobbing as we scurried them to their cabin while the rains chased at their heels.  They memorized the names of all the people who fought for a turn to push them from place to place. 

Their caregiver fought unsuccessfully to block all the sun from their delicate skin.  The pink hue on their noses and smiling cheeks make them look perky and alive.  It was their first taste of the sun tickling their skin.  It made Clara laugh. 

For the first time, I saw Ariel, the quiet twin, laugh.  Until this weekend, her smiles were infrequent.  But the smiles came at meal time and during chapel.  She came up twice to hug me.  Perhaps for the first time in her life, Ariel left her baby doll who was “sleeping in her bed” as The Twins headed for chapel on Sunday morning. 

Oh, yes, the wonder is back and you remember why you do what you do.

What are some of the things that remind you of the wonder of ministering to this exciting population?

Jesus Asks for a Favor

John 4:7 and 8

Central Theme:  The Lord of the Universe asks mankind for a favor.  He wants our love.

 

Introduction

              Run or walk quickly around the room several times.  Be sure that people know that you are out of breathe and need a drink of water.  Get your water bottle and talk about how good it is to drink water.

 

       I.     Remember the time Jesus asked for water.

              A. Have a member read John 4:7 and 8.

              B. Tell the story of the woman at the well.

 

           II.     Many things can be sad about this story but…

                   A. Think about the fact that Jesus asked a woman for water.

              1.  This was strange because she was a woman.  Jews didn’t talk to women

                        2.  She was a Samaritan.  Jews didn’t talk to Samaritans

                        3.  She was a sinner.  Jews didn’t talk to sinners.

                   B. Tell about a time you were injured and how you didn’t want to ask for help with opening doors, etc.

                   C. It is humbling to ask for help.

              D. We all know how humbling that is because as people with disabilities, we have to ask for help a lot.

              E.  In this story, God asked man for help.

 

     III.     God is God .

              A. He needs nothing.  But he asked for water.

              B. He created all things–even water.  But he asked for water.

              C. He knew she was a sinner.  But he asked for water.

 

     IV.     Jesus asks us to love him.

              A. He needs nothing.  But he asks for our love.

              B. He created everything–even me.  But he asks me to love him.

              C. He knows we are sinners.  But hs asks us to love him.

 

Conclusion–Jesus asked the woman for water and she gave him.  He is asking us for our love.  Will you give to him?  He has given so much to you.

This is a fact sheet from the Advocacy Center.  Some advocates have said this is the most understandable information about the tier system they have received.

FACT SHEET

YOUR RIGHTS UNDER IMPLEMENTATION OF THE TIER SYSTEM:

CHALLENGING TIER PLACEMENTS

BACKGROUND

In 2007, the Florida Legislature amended section 393.0661, Florida Statutes to implement a four-tiered waiver system to serve clients with developmental disabilities in the DD and Family and Supported Living Waivers.   APD published a set of proposed rules to implement the tiers and held a public hearing on April 24, 2008.  Four waiver recipients, Southern Legal Counsel and the Advocacy Center for Persons with Disabilities filed a challenge to the proposed rules:  Moreland et. al. vs. APD, DOAH case number 08-2199RC.  The legal challenge is ongoing and scheduled for trial in June.  APD nevertheless issued policies and informational letters to proceed with the tier assignments.  APD sent out “informational letters” to waiver recipients.   By the end of May, APD planned to send affected waiver recipients a notice letter setting out the tier assignment.  According to APD, the tier assignments would take effect on July 1, 2008.  Support coordinators were instructed to assist waiver recipients to “reprioritize” the services and submit new support plans with reduced services to meet the tier caps by the middle of June.

 

EFFECT OF THE CHALLENGE TO THE PROPOSED RULES

 

n      Until an Administrative Law Judge rules on the validity of the proposed rules, the rules cannot come into effect. On May 14, 2008, APD advised that it would delay tier implementation “until further notice” as a result of the Rule Challenge. 

WHAT YOU SHOULD DO NOW

At this time, waiver recipients may have received informational letters. YOU DO NOT NEED TO TAKE ANY ACTION.  The informational letters are not a notice of tier assignment.

YOUR RIGHTS

When and if you receive a Notice of Tier Assignment, you have the right:

n      TO CHALLENGE YOUR TIER ASSIGNMENT

n      TO REFUSE TO CHANGE YOUR SUPPORT PLAN TO REDUCE YOUR SERVICES

n      TO REQUEST AN ADMINISTRATIVE HEARING and

n      TO HAVE YOUR SERVICES CONTINUE IF YOU REQUEST AN ADMINISTRATIVE HEARING WITHIN 10 DAYS.  

 

UPDATES AND OTHER INFORMATION WILL BE PERIODICALY

POSTED ON THE ADVOCACY CENTER WEBSITE

www.advocacycenter.org 

 

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