Supervision


Leonard is a handsome young man who was separated from him siblings at birth.  The State of Florida convinced his widowed mother that she could not take care of another child, especially one who was intellectually disabled like Leonard.  Therefore, the other children never knew about their brother.

The brothers and sisters were all under eight years old; and they didn’t understand that their mother was pregnant when their father died.  When she left for a few days, they didn’t know that she had a baby.  She made weekly trips to visit him every Saturday; but she never told them about him.

As their mother was about to die, they learned about their brother.  They began a search; but they could not find him.  Finally after 15 years, they simply googled his name and found him.  These are successful men and women who are Christians.

Even though it had been more than 30 years, they arranged a meeting.  Then they began to schedule visits with him.  Several months ago, they moved their brother to another city in our state which is much closer to them.  Reports from him have been discouraging.  Our understanding is that Leonard has tried to commit suicide.

I have no idea that this report is true.  However, this I do know.  It is a tricky thing to move a family member away from their friends and familiar surroundings.  Many times, siblings make promises to their parents that they will take a brother or sister who is developmentally disabled into their homes when the parents die.

Most siblings try hard to fulfill this commitment.  However, there is one factor than many parents and siblings forget to consider–the person who is mentally challenged.  Many times, they don’t want to move.  They have friends and their lives are established.  They must leave their homes, their rooms, all their things.  At times, siblings need permission to be released from an unworkable situation.  Other times, siblings may need added help in finding ways to help their brother or sister adjust to new surroundings.

What have you found that works in these hard situations?

Of course, there are many differences between men and women; but one of the biggest differences is the attitude toward tools.  Men love tools and love inventing tools.  There is a tool for every job a man has to do.  Did you know there is a special wrench used exclusively for adjusting spark plugs?  Another one for adjusting the carburetor on your car?  There is even a widget that is only needed to replace the screens of your house.

Women on the other hand love to work with whatever is available.  Give a woman a metal nail file, a butcher knife and a pair of scissors; and she will attempt to conquer the world.

At times those of us in specialized ministries are told how special we are because we do what we do.  Usually, we smile and thank the person.  However, we know that this is actually not the truth.  At The Special Gathering, we work with people who are mentally challenged.  Our members are more like other adults than they are different.  Even though we do have different tools in our tool box from those used in the normal congregational setting.

First, we must insure that our members are safe.  I jokingly say, “I’m the only pastor in South Brevard or Indian River County who carries rubber gloves in my suit pockets.”  But rubber gloves are merely the beginning.  We must check our members when they arrive and when they leave.  We must insure that they are safe about each half hour by doing a visual check on many of our members.

Second, we need some training in how to teach.  Our members learn on a third to fourth grade level but socially they are kind of stuck in junior high.  Nevertheless, they have all the concerns and worries of any other adult.  Combining those skills while understanding that our members must be treated with the dignity of any other adult, does take some fine tuning of your teaching skill set.

Third, we have transporatation issues.  Today, I’m minus a van to pick up my members because the church that lends us their vans needs to use it.  I have to rearrange my transportation schedule.  Our members don’t drive.  If we don’t pick them up, they probably won’t get there, no matter how much they want to attend.  We have learned, that if we pick people up, the attendance rate is 80 to 90 percent.  If we depend on others, that is, support staff to provide the transportation, their attendance drops to 30 to 40 percent.  And the longer support staff is used, the greater the decrease in attendance.

Of course, there are other issues that face us.  On the other hand, there are some pretty important things that we don’t face.  Our members are extremely grateful for anything we do for them.  We often say that we are the only pastors in town who are loved by all of our members.  Part of our tool box doesn’t have to be a way to pacify our parishioners.

If you look at statistics, our congregations are fairly large.  But no matter how successful we become, we don’t have to be concerned about anyone else wanting to take our jobs.  In the years, I held positions in the local church, there was always someone aspiring to take my position or wanting to tell me how to do the job I was doing.  At Special Gathering, we have no sandpaper attachment needed to smooth over the feelings of people who want to take our positions.

Also, our members are pretty stable emotionally.  There are some members who have a dual-diagnosis but they are definitely in the minority.  When I first ventured in to this ministry, I was warned by my pastor to beware of this population because they are draining.  Then I explained that I would be working with people who are mentally challenged and that they are surprisingly emotionally stable. “Oh,” he said with a grin.  “Then you’ll be working with people who are less draining than I do.”

Yep, those of us who are on staff and volunteer at Special Gathering believe that we have the best positions in the Church.  We are working with people who are grateful, helpful and pretty stable.  Weighing the pros and cons, I’ll keep my tool chest.

What are some of the things you do with your members that are different from what you would be doing in a different congregation?

ImageEach year, Special Gathering of Indian River partners with the Brevard County Rec Department to provide special events.  This Saturday, we will be taking a group of SpG members to SeaWorld, an amusement park in Orlando.  These trips are a great time of fellowship and growth.

I’m responsible for 34 people who will be attending.  I’m not supervising these people; but I am gathering their information and helping to get their tickets.

However, I find several things that I cannot understand.  First, I go over my list of people who are attending several times.  I keep a complete and thorough list.  Every person gives me their money and I record the amount they gave me.  I don’t let anyone get away with not paying.  Yet, I, occasionally, manage to have less money that I should have.  Usually, it is only a few dollars so it isn’t a financial burden.  It is a source of frustration though.

ImageMy questions is:  Where does that $3 go?  Is there a hole in an envelop somewhere? Have I lost my ability to count?  This week I’ve gathered the money for the 34 tickets and I face the same dilemma.

Perhaps, it is like the proverbial sock that disappears in the short journey when transferring from the dirty clothes hamper to the dryer.  My problem is not the amount of money that disappears but WHERE has it gone?

Do you have any answers?  Does this ever happen to you?  Is this a sign of stress?  Perhaps, there is a simple explanation.  Can you help?

On Friday, June 3, 2011, there was a web meeting that District 7 Support Coordinators had with Tallahassee Agency for Persons with Disabilities (APD).  This meeting may have included Support Coordinators from around the state.  However, we have not knowledge of that.  Below is a statement that a support coordinator sent to Richard Stimson, Special Gathering Executive Director, about the meeting.

Hey, call me if you have time tomorrow.  The Host home issue is going to be BIG!  They (APD) talked about it in the web training on Friday. Anything to save a buck.  If people are not looking appropriate for Res Hab (residential habilitation) or NOT making progress, they are heading to the host home just like the good ole days of HRS (Health and Rehabilitative Services).  Hate to say it; but I think you were right.

You need to check this out with Support Coordinators you know, but it appears that the state is going to try to move clients that do not want to live in supportive living or who are unable to live in supportive living into host homes (foster homes).

While host or foster homes are not proposed in other states, Florida, like California, is known as a pace-setter across the nation.  This is a move backwards for people who are mentally challenged.  Having served on the Local Advocacy Council for several years, I learned that there is little or no oversight in this type of home.

As a ministry within the mentally challenged community, it is important that we be people of prayer for our members.

About fifteen years ago, a widow wanted a quality group home to be built in our county for her son.  For years, her son had been associated with Special Gathering (SpG).  She desired that once built, SpG would oversee the supervision and run the home.

During a SpG board of director’s meeting, there was a heated discussion when the proposal was presented.  One board member adamantly opposed this arrangement.  She argued that group homes require authority, control and oversight on a daily basis.  She believed that our healing mission of evangelism and discipleship would be compromised.  The prophet Isaiah speaking for the Lord agreed with her.  His approach had been “Comfort ye, comfort ye, my people.”

her logic prevailed, even though the other board members resisted her for a time.  One at a time, each person saw the wisdom of her line of reasoning.  It was finally voted that SpG would not own or operate group homes.

The Lord has made our mission clear.  We are a ministry within the mentally challenged community whose purpose is evangelism and discipleship.  Many things come under this broad heading, but the daily operation of group homes is not one of them.

Staff members of SpG do believe that under most circumstances group homes are a better alternative for mentally challenged people than living alone in their own apartments.  Our concern is not a preference of housing arrangements; but it is a concern over the  level of supervision that is provided in most states for people living in their own apartments.  However, this the personal opinion of our staff members, not the policy of our SpG, Inc. board of directors.

As reported by Naked Politics 

NEW APD DIRECTOR CARL LITTLEFIELD QUITS 

Carl Littlefield, tapped by Gov. Rick Scott to lead the Agency for Person’s with Disabilities, unexpectedly withdrew his name from consideration and said he wasn’t seeking the post. Littlefield was scheduled to appear 9 a.m. at the Senate Children Families and Elder Affairs Committee, where Chair Chair Ronda Storms was going to rake him over the coals for his handling of a sex scandal at the Human Development Center, a Hillsborough County APD provider

The center faces allegations of sex abuse and lax supervision. Storms’ committee recently sent a scathing letter about the matter, and Littlefield had little hope of surviving an in-person appearance.

Senators had wondered why the abuse issues at the group home had not been addressed in the more than two years since complaints first arrived at the office of the Tampa Bay region’s area administrator, Littlefield.

“In two years, he never reached out to me,” said Sen. Ronda Storms, R-Valrico, who called the hearing after reading an investigation in the St. Petersburg Times published in December. “In two years, he never picked up the phone.”

Littlefield’s letter withdrawing his nomination, released this morning after Scott appeared on a conservative talk show, was received by the governor’s office yesterday evening at 5 p.m.

Click here to read Carl Littlefield’s letter withdrawing his nomination.

You’ve probably seen the commercial on TV in which one of the private transporters extols the virtues of logistics.  Ahh! In special needs ministry, we know logistics and logistics can either be our best friend or our worst enemy.  Most of our programs are not like Wayside Baptist Church in Miami, Florida, which has 150 members.  Almost all of them attend the weekly services.  At Wayside, they run no vans or facilitate any other transportation. 

However, each week at Special Gathering we transport as many as 100 people from their homes to the various places where we have worship services.  Then our staff makes sure they safely get home from there.  Occasionally, we facilitate the transportation of people from our 2 Sunday morning programs to an event sponsored by the Brevard County Recreation Department.  We don’t ever provide transportation home from the party.

We do this for three reasons.  Without this transportation, some of our members would not be able to attend these events, if they came to Special Gathering.  Rather than make our members decide between our chapel programs and a party, we work to make sure they get to the party from our program.  Second, on these few Sundays, this time helps parents’ of our members.  It gives parents a few additional hours of respite time.  Third, our members enjoy the parties.  If the transportation we provide makes it easier for them, we try to make it happen.

Yet, there always seems to be an interesting bletch in my logistical planning during those extra events.  While we have our regular transports running smoothly, it is those extra times that makes me want to pluck a few eyebrows to relieve the pain.  Getting our members to the party is always easy, whether I personally transport them or we use a public conveyance.  It is getting them home safely that becomes the problem.  We say that we don’t provide transportation home from the party but someone always gets confused.

Over the years, I’ve called each member’s home to ask if they would be attending.  This was a great way to have personal contact with all our members.  However, this year, I put a notice in our monthly newsletter that said, “If you desire to attend the rec social, call Linda Howard.”  Only five people called and each of the parents assured me that they would be picking up their children.  These were also my more reliable parents. 

In all, there were more than 35 people who came from our program to the rec social.  But I was only responsible for five of them.  To insure that nothing went wrong, I was at the party at the end, making sure that all Special Gathering members had transportation home. 

It worked.  Everyone left with the person with whom they were supposed to go.  Logistics.  I love it.

There is one thing that is almost never told about the sinking of the Titanic.  First, many people in third class were not allowed or did not know how to navigate through the corridors of the ship to be rescued.  Many of these men, women and children went down with the ship.  Also, when the crew began to realize that the boat was in danger (no one every expected it to sink), the women and children were put into the life boats and then lowered into the water.  No men were allowed on the boats.

Later when it was evident that the Titanic was certainly sinking, men were allowed on the boats.  However, about half of the lifeboats were less than 50 percent full as they were being lowered into the sea.  As the Titanic sank, many of the men jumped into the icy ocean.  For several reasons, these men were not rescued by the lifeboats, even those that were only half full.   

In some cases the women were paralyzed by fear.  In their immobilized situation, they could not help the dying men get into the boat.  Second, the experienced sailors who were at the helm of some of the lifeboats understood that a suction effect of the Titanic’s sinking could grab the smaller life boats and engulf the small vessels downward with the larger cruise liner.  These helmsmen would not allow the boats to return to the area and become rescue vessels.  Another dynamic that is not often spoken about is that the women were looking for their husbands and wouldn’t allow other people onto the boats.  By looking at the faces, they doomed not only their own husbands but so many others to a freezing death. 

In researching survival techniques, there are several important rules.  The first may be, “Do not look at their faces.”  Stated in other terms:  You cannot be choosy about whom you rescue.  Rescue efforts must extend to everyone.  Looking for a particular person and being exclusive about who is allowed on the lifeboat means that many people will die.

This Sunday at Special Gathering we were faced with a crisis situation.  Mandy, a young woman who seizures, quietly slipped from her seat on to the floor as I was wrapping up my sermon.  Because her seizures are usually short and mild, I asked a volunteer to begin to time the seizure.  Another volunteer slipped from her seat and sat next to Mandy, quietly praying for her and comforting her.  I wrapped up the devotion before the three minutes was over.  In that time, Mandy was talking.  We asked her if she wanted to call 911.  She said, “Yes.  This seizure was different.  I need to go to the hospital.”

It is the natural reaction of everyone who faces a crisis to look at the faces.  Accessing a situation means that you must quickly–immediately–make decisions.  You cannot become paralyzed by the circumstances that confront you. From the way that she had slipped from her seat, I felt that Mandy had not hurt herself.  However, I also knew that she should not be moved or even helped for at least three minutes.  I determined to close the program in an orderly way so that our members were not unduly upset. 

While Mandy’s face could have etched my consciousness blocking out everything else, training told me that I must also determine the best procedure for the entire group.  I felt that the best way to handle the situation was to calmly follow the normal process. 

Within four minutes, the EMT’s had been called; and they were on their way.  As it turned out, Mandy’s neck was hurting which meant there could be a serious neck or back injury.  Had she injured her back and had we allowed or encouraged Mandy to move into any other position, she could have greatly increased her injuries.  After a CAT scan, the hospital determined that she had no neck or back injuries and she was released from the hospital.

While Mandy’s circumstances were important, as program leaders, we must also learn to access the needs of the entire group.  Looking to rescue only the one person you love may doom everyone during a crisis situation.

The adult day program in Angie’s city allows us to meet in their building after their daily activities.  Angie does not speak.  However, when she came to me with a notice repeatedly pointing to Peter’s name, I knew she was reminding me that Peter was on vacation.  Peter’s parents are her ride home from Special Gathering.  She had no note from her family saying that she could stay for Special Gathering and explaining how she would get a ride home.   Her work program staff had brought her to us as they always do.

I went to her staff and asked if she had brought a note from home saying that she could stay.  No.  They assumed that she would be staying per her normal routine without any confirmation from parents.  I told Angie that she could not stay because I didn’t have any information from her mother.  Angie began to wail and cry.  She didn’t need words to communicate her displeasure at not being able to stay for the chapel program.  She was crying and pointing back to the room where we were situated as I ushered her back to her staff.

Honestly, it broke my heart; but her mother could not be reached. I could not keep her without a ride home and parental permission.  Within a few minutes, her van driver came into the room.  “I have Angie’s mother on the phone.  Angie has her permission to stay.  Mother told me this morning that she would be staying.”  After my brief conversation with Mother on the phone, Angie was settled back into her seat awaiting the chapel services to begin.  Her smiles were contagious.

Often, we hear moaning and groans from children, teens and adults about “having to go to church.”  It is such an amazing joy to work with people who wail, moan and cry if the CAN’T attend worship services.  Sure there are some who may be pushed out the door by their parents or caregivers.  Yet, again and again, the Holy Spirit is able to win over these men and women by the love of our volunteers and the Holy Presence of God’s grace evident during our chapel services. 

When is it appropriate to cry?  When you can’t come into the presence of the Lord is a good time to weep, like my friend Angie.

On Friday, I needed to call the supported living coach of two members who are living in their own home.  I tried to call the number I had in my record but I got a message that this number could not be dailed.  Therefore, I called the members’ home and spoke to the one member who is able to read. 

“Can you give me the phone number of your coach on your refrigerator?”  I asked

“Sure,” she told me.  She read the number as 635 1237.  The number I had in my records was 636 1337. 

“Are you sure that is correct?  Read it to me again,” I said.

Again, she read 635 1237.  “June, could the number be, 636 1337?”

“Well, I said 2/3,” was her response.

“What about the first numbers 635.  Could that be 636?”

“No,” she said.  “It’s 635 1247.” 

That afternoon, I went into their home to look at the number on the refrigerator.  Clearly, in big letters, the number was 636 1337.  After asking permission to use their phone, I called the coach.  This time the message I got said that this number had been disconnected.

Should there be an emergency, June would be unable to read the phone number posted on her refrigerator.  However, even if she could call, the number was recently changed; and the new number had not been recorded on the refrigerator. 

In reality, I’ve found this coach responsive and responsible.  She changed the number in a few days and there was not an emergency.  Yet, the “what if “questions loom largely over the horizon of many people who have been put into independent living arrangements.  Even more disturbing is the resistance of The State regarding opposition to these situations.

More and more parents who have shaped and fought for an inclusive environment for their children are resisting the current independent living arrangements which mentally challenged adults face with independent living.  Still, state officials continue to insist that educating ignorant but well-meaning parents will eventual work.  These parents want concentrated, communal arrangements wherein their children will be able to live in apartments among their friends, without restictive limits in regard to the number of mentally challenged people who can live in one building or an apartment complex. 

What if June and her roommate was living in an apartment complex with several other people who are developmentally delayed?  Wouldn’t she be safer than this current situation?

USATODAY.com  has reported that approval of the ethics of clergy has dropped to only 50 percent.  This is the lowest the rating has been since the scandal in the Catholic church was report in which priest had sexually molested children and the Roman Catholic Church had systematically worked to cover up the abuse.

While questioning why this drop from 56 percent in 2008 to 50 percent in 2009, it is important that we not lose our perspective as ministers, teachers and elders within the mentally challenged community.  There are many pro-active things that we, as ministers, should do that will that will insure that we are not caught in a compromised situation. 

Some have reported that sexual abuse within the mentally challenged population is over 75 percent.  While we don’t believe the statistic is that high, one percent is too high.  It means that we MUST be proactive.

First, we should not be alone with one member.  Be sure that all events are public events.  Should someone need to speak with you “privately” move to another part of the room, not out of the room.  Move to a place where others cannot hear you but can still see you. 

Second, report all accusations of abuse to the proper authorities.  In every state, there is an 800 number that you can use to call and report abuse.  That number is found in the front of your phone book.  You can also Google for the number.

Third, understand that proactive steps will help to stem temptation.  Be aware, trust no one, especially yourself.

Fourth, require background checks for all volunteers and teachers in your program.  Be sure that all your teachers do not have private access to your members.

For the past two weeks, I’ve lived with a spirit of adventure.  I’m excited to have a new kitchen.  Therefore, I’ve shifted my activities and mind into Hurricane Mode.  I decided to make an adventure out of my weeks without some of the modern conveniences that we’ve come to expect to have available at all times.  This Saturday, I lost my stove and water in the kitchen.  I also lost most of the floor space because the new tile flooring was being installed and needed to dry.

I knew I had to prepare lunch for 60 members of Special Gathering for Sunday morning.  (Long story.  You don’t want to know the details.)   The choir was to sing and I was to share with about a thousand people about Special Gathering.  Everything went amazingly well until a fourth of a gallon of pinto beans spilt all over the floor of my car on my way to the church.

Then things went from bad to worse and from worse to much worse.  (Again, long story.  You don’t want the details.)  Suddenly, I no longer wanted any part of the Sunday morning adventure that had invaded my life.  I wanted my car to be clean.  I wanted to represent The Special Gathering to our host church with an anointed message.   I wanted the choir to do well.  Most of all, I wanted to insure that our program was going to run safely. 

I almost shifted into a degree of panic, until the years of Special Gathering training kicked me into automatic drive.  The most important thing was to insure that our members were safe.  Everything else was second gear.  Putting on my supervisor hat, I gathered my clip board and began taking roll.  Within forty minutes, all was right with our program again and I could take off my supervisor hat and put back on my choir director/pastor hat. 

The last thing our members need to see from anyone who leads a special needs program is panic.  That is why I am extremely grateful for the years of methodical training in safety and supervision.  On October 30 and 31, in Melbourne, Florida, we will have our  Annual Treachers’  Retreat.  We will be wrestling with how to effectively lead a worship service within the mentally challenged community.  If you are interesting in attending our retreat, you may contact me at lhoward@specialgatherings.com

A reader submitted a most interesting comment yesterday taken from the July 19, 2009 entry entitled “Wiggle Room.”  S/he thought I was advocating establishing a room where people whose disability is within the autism spectrum could move and jester, hum or grunt while processing the auditory messages they are receiving. 

At Special Gathering, we don’t have such a room but we have made special concessions for our members whose disability is autism.  They are allowed much more freedom of movement and expression than our other members.  Occasionally, we must remind our other members that what is happening is part of their individual disability but usually there are no questions.

Maria is allowed to move from place to place freely.  Sam can’t tolerate moving with the crowd.  He is allowed to use a separate door, when we are going from room to room.  James sits at the back of the room and often gets up to change positions and seats.  Ted had a special chair far from the others, where he could sit alone.  Comfortably away from the fray, he could direct the rest of us from his vantage point with punches of verbal instruction.  Of course, he freely took that liberty.

As our membership ebbs toward more autistic worshiper, it will be interested to see how our worship changes to accommodate this growing population, within the disability community.

What are some things you are currently doing to help your members whose disability is within the autism spectrum?  Could you do more to allow them to better enjoy the worship experience?

Of course, everyone is all for removing people from institutionalized settings.  In the state of Florida I don’t believe there are thousands of people in institutions, unless you are talking about group homes–which are now homes with a maximum of six people living together with staffing.  Pretty sure this would not qualify as an institution.

Is the only alternative is putting mentally challenged persons into an apartment by themselves, where they are isolated and lonely, with minimal staffing, in the worst sections of town?   Then, yes, I believe–from the horror stories I’ve seen first-hand–this is irresponsible social work.

As an alternative, senior citizens have found that living independently when you are weak and vulnerable is a recipe for disaster, even if it is much more cost effective for the State. That is why we now have communities for senior citizens.

Shouldn’t we copy something that is proven to work, rather than doing social experiments on our most vulnerable population? I’m not sure that it wouldn’t be just as cost effective as living independently. People would be able to choose whether they would live there or not and full-time oversight could be provided by pooling State resources.

Many families are beginning to feel that this paridiam would be a win-win for everyone.  What do you think?

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