February 2011

Her brown hair is short and it sports a utilitarian style.  Her uniform was clean and pressed with precision.  Last year, she held an important position with the Federal government in Washington, DC.  She has a Master’s degree in management.  Yet, through no fault of her own, she is now working for less than $12 an hour, doing the same job she did while she was in high school.  Her new job puts her in close contact with Special Gathering  members. 

Yesterday, as I approached her, I could see the tears reaming her eyes.  “How are you?” I asked. 

“I can’t believe my life has come to this,” she said, marking a check list and reviewing the things that needed to be done to keep the people she oversees safe.  She turned away from me so that I could not see the lone tear that pierced her left cheek.

I took her in my arms and hugged her.  We had bonded from the first time we met because she is a devoted Christian and she attends the same church that I’ve had close connections with for years.   Her greatest concern isn’t the amount of money that she is making.  It is that by working with our members on Sundays, she is not able to attend her church.  I’ve invited her to come to Special Gathering, instead; but she isn’t able to break away and come.

As our members bounded away from her a few hours later, I couldn’t help but contrast their lives with this caregiver’s. I also saw myself in the caregiver’s position; and I wished that I could more easily identify with my members.   These past two weeks have been a struggle for me.  I can identify with the middle-aged woman who found her life in shambles.  No,  my situation isn’t as tragic as hers.  However, circumstances have definitely changed. 

Is there an answer for me and for her?  I saw that the answer was slapping me in the face.  Our members have the same concerns of any other adult.  They have bills to pay.  They have boyfriend/girlfriend issues.  They have problems with the people the work with and the people with whom they live.  Their bosses aren’t always fair.  They have health issues.  Their aging parents have delicate health concerns.  But they bound from place to place happy to be alive.

Sure there are those within the mentally challenged community who live with depression.  Others are just plain aggravating or even mean.  But as a population they have so much that could be distracting and oppressive; and yet they determine to see the best for themselves and for their families.  Add a relationship with Lord and we find the most positive and resilient people I’ve ever met. 

Here are several things that I’ve found that the mentally challenged community does that helps them to maintain their mental stability in the face of trauma.

  • They continue to laugh at themselves and with each other. Laughter is still the best medicine.
  • They maintain a close-knit community.  They work together, dance together, play together and vacation together.
  • They are repeatedly trained to walk away from offensive situations, rather than stew about  misunderstandings.  This is a great skill that we should all practice daily.

Each of us are able to make decisions that can and should alter our lives.  Most of these decisions are simply deciding to allow God to fight our battles and laugh in the face of hard circumstances.   Of course, keeping in daily contact with the Lord, family and Christian friends can help change our lives in the middle of difficult circumstances.

Jesus, God’s perfect gift

I Samuel 16:12

Central Theme:  God has chosen you for a special work.

Introduction—I will show my husband‘s metal for superior accomplishments.  He knew that God wanted him to be an engineer and he did it for the Lord and he did a great job.  Sometimes there are special signs given to people to let them know that they have a special work.  That was what happened to David

       I.     Have a member Read I Samuel 16:12.

              A. Tell the story of Samuel and David.

              B.      Samuel wanted to choose the older brothers.  They were handsome and strong.

              C. David did not fit the picture of a king but God saw a great warrior and king in this young man.

           II.     What does God have for you to do?

              A. Each of us have a special place in God‘s heart.

              B. His love extends to all of us and he wants us to do his work.

              D. He may not want us to be a king; but his work for you is needed.

              C. God can teach others through your life.

              1.  Years ago, the choir sang at a Women’s meeting, God used their singing to tell a mother that God could use her son who is also mentally challenged.

                        2.  God will use you if you let him.

     III.     Jesus did not appear to be the kind of person that would save the world.

              A. David was a humble man and didn‘t appear to be strong and powerful.

              B.  God used the choir and he can use you and me.   In fact, her son is now in the Special Gathering choir.

Conclusion–No matter what it may look like in my life, God wants to use you and me.

Richard Stimson wrote in comments for February 25 post.  However, I wanted to be sure that everyone had access to this information.
If you want a fuller write-up of the story, here it is:

Received this posting from Richard Stimson.  He is not only the founder and pastor of The Special Gathering, he is an advocate for the mentally challenged community.

This article was sent to me: http://www.healthnewsflorida.org/top_story/read/disabilities-acting-director-resigns 

This is one of those issues that I find myself getting really upset over.  While this issue is important, there is a deeper more important issue and I do not find anyone addressing the basic legal issue of informed consent.

What do we do with the sexuality of mentally challenged persons? The controversy centers around one group home. According to healthnewsflorida.org, “The St. Petersburg Times has reported extensively about a practice known as ‘quiet time,’ when male residents of the home were allowed to have sex in their rooms. The practice allegedly led to abuse of some residents who couldn’t protect themselves.”  Everyone is in shock and horror regarding the sexual abuse that has been documented to have occurred in this home.  While this may be characterized as an extreme case, it cries out for a written policy to be developed by APD regarding sexual practices in group home.  Why is it so hard for APD to develop a policy regarding sexual practices in group home? 

In my opinion, it is basically illegal for mentally challenged persons to be sexually active.  As I understand it, the law assumes that a mentally challenged person is unable to give informed consent to have sex.  If a “normal” person has sex with a mentally challenged person they are guilty of rape (just like an adult having sex with a 14 year old).  This is a law being enforced today with people in jail over the issue. 

Just because both parties involved are mentally challenged and willing does not change the fact that the law assumes they cannot give informed consent.  If an agency policy facilitates this sexual behavior, there will be a lawsuit.  This became an issue in NY.  In fact, a book was written about the issue and I have a copy of it in my library.  The book is, in fact, a collection of presentations on the issue.  There were two cases in NY.  There was a client that was allowed to eat himself to death. The second case evolved from a father who successfully brought a lawsuit against an agency that allowed his daughter to be sexually active with a male client in the group home.  It is the old issue of mentally challenged persons being forever children or if they are adults like anyone else or something in between. 

How can APD develop a policy to facilitate an activity that the law assumes that client cannot give informed consent to do?  If you say that mentally challenged persons have the “right” to be sexually active then the law needs to be changed.  Can you imagine the media coverage regarding a law in Florida that makes it legal for “normal” persons to have sex with mentally challenged persons?   

But neither does APD want to outlaw mentally challenged clients being sexually active.  I hear people talk about having an assessment that shows informed consent.  It may exist but how well that would hold up in a lawsuit?  I was in New Orleans when AAMR came out with their book on informed consent.  It was the main attraction.  There were hundreds of people there.  I got there early and got a seat in the second row.  After they did their presentation, I asked a question based on the NY lawsuit and sex.  Their answer was “this is why you have insurance”!  Not what agency heads wanted to hear.

I think most of you know that I am a conservative preacher so I believe and teach that it is God’s plan for sex to be between one man and one woman within marriage.  I think there are mentally challenged persons who are able to function within marriage and should be allowed to be married.  Therefore, I do not make the case that we should assume all mentally challenged persons are unable to give informed consent.  That being said, I also think many if not most of the people I serve have an informed consent issue.   

So was the issue with the Tampa home that safeguards were not in place to protect those that did not want to have sex? Or is it that it was inappropriate for the agency to be facilitating sexual behavior?  In fact, didn’t they have a responsibility to stop it from happening?  Or is there another option?

For the record, I also sent a letter to both people involved in church ministry and those who work professionally within the field and I know that this post will be read by many people who do not share my same moral values.  If you have time to respond, I would hope you would comment.  I would also hope you would be respectful to those with whom you may fundamentally disagree.

 We are grateful for the work that George Andrew did in summerizing the Medicaid Reform Bill as it relates to APD.  Andrew has more than a decade working with people with disabilities.  He worked first for APD and later because a support coordinator, where he is currently serving.

George Andrew Summary of the Medicaid Reform bill 234 pages long as of 2-17-11,

This is as it relates to APD not including the medical part DD folks would still be subject to.

Executive Summary:

Adds Downs Diagnosis to our program.

Requires monthly payments by Medicaid recipients.

Prevents using a Medicaid service if employer has health care sponsored plan

Requires parental income based fee for DD kids in HCBS waivers.

Require AHCA to apply to modify Federal Waiver & run limited managed care if denied

Requires all Medicaid recipients to be enrolled in Medicaid managed care

Prevents Medicaid recipient from enrolling in managed care if has employer sponsored HC.

Plans require Primary care providers to get same Medicare rate

APD required to develop / implement a comprehensive redesign the program

AHCA can impose and collect fees from recipients if approved by Medicare s. 409.906(13)(d)

AHCA/APD given power to chg rates, # of services, limit enrollment based on funds available.

Exempts DD persons as defined under F.S.393.63 from receiving medical services under managed care program.

Summary Lines 6-9: 

Bill Lines:

redefining the term

7 ―developmental disability‖ to include Down syndrome;

8 defining the term ―Down syndrome‖ as it relates to

9 developmental disabilities; amending s. 393.0661

 Summary Lines 65-67

Bill Line 1077-1087 providing

65 for the payment of monthly premiums by Medicaid

66 recipients; providing exemptions to the premium

67 requirement;

Comment: Would exempt SSI elig receipients receiving instutitional care payments

Summary Lines 69-71

Bill Lines:

prohibiting a recipient who has access to employer-sponsored health care from obtaining services reimbursed through the Medicaid fee-for-service system;

Summary Lines 91-94 

Bill Lines 1904-1911 

providing for a parental fee based on family income to

92 be assessed against the parents of children with

93 developmental disabilities served by home and

94 community-based waivers

Lines 136-139

Bill Lines:

  directing the agency to apply for and

137 implement waivers; providing for public notice and

138 comment; providing for a limited managed care program

139 if waivers are not approved; creating s. 409.964

Lines 140-141 requiring all Medicaid recipients to be enrolled

141 in Medicaid managed care; providing exemptions;

Lines 142-146  prohibiting a recipient who has access to employer

143sponsored health care from enrolling in Medicaid

144 managed care; requiring the agency to develop a

145 process to allow the Medicaid premium that would have

146been received to be used to pay employer premiums;

Summary Lines 189-191 

Bill Line 2423-2426

requiring plans

190 to pay primary care providers the same rate as

191 Medicare by a certain date

Summary Lines 424-457 

Bill Lines:

393.063 Definitions.—For the purposes of this chapter, the

424 term:

425 (9) ―Developmental disability‖ means a disorder or syndrome

426 that is attributable to retardation, cerebral palsy, autism,

427 spina bifida, Down syndrome, or Prader-Willi syndrome; that

428 manifests before the age of 18; and that constitutes a

429 substantial handicap that can reasonably be expected to continue

430 indefinitely.

431 (13) ―Down syndrome‖ means a disorder that is caused by the

432 presence of an extra chromosome 21.

433 Section 3. Present subsections (7) and (8) of section

434 393.0661, Florida Statutes, are redesignated as subsections (8)

435 and (9), respectively, a new subsection (7) is added to that

section, and present subsection (7) of that section is amended,

437 to read:

438 393.0661 Home and community-based services delivery system;

439 comprehensive redesign.—The Legislature finds that the home and

440 community-based services delivery system for persons with

441 developmental disabilities and the availability of appropriated

442 funds are two of the critical elements in making services

443 available. Therefore, it is the intent of the Legislature that

444 the Agency for Persons with Disabilities shall develop and

445 implement a comprehensive redesign of the system.

446 (7) The agency shall impose and collect the fee authorized

447 by s. 409.906(13)(d) upon approval by the Centers for Medicare

448 and Medicaid Services.

449 (8)(7) Nothing in This section or related in any

450 administrative rule does not shall be construed to prevent or

451 limit the Agency for Health Care Administration, in consultation

452 with the Agency for Persons with Disabilities, from adjusting

453 fees, reimbursement rates, lengths of stay, number of visits, or

454 number of services, or from limiting enrollment, or making any

455 other adjustment necessary to comply with the availability of

456 moneys and any limitations or directions provided for in the

457 General Appropriations Act or pursuant to s. 409.9022.

Summary Lines  

Bill Lines 3218 & 3223-3224  

(1) The following recipients are excluded from

3218 participation in the Medicaid managed care program:

(c) Persons who have a developmental disability as defined

3224 in s. 393.063.

The Catalyst and the Champion

The Future of Ministry within the Mentally Challenged Sub-culture

I Corinthians 1:17

When I was a teenager in the late 1950, my mother was the lead person with the youth.  She was director of the Youth department in our Sunday school and she was in charge of the Tuesday “play night” for the teen.  Later, a music director was hired and the youth choir became the center of all youth activities and ministry.  This was typical.  However, within a decade a revolution came within the church. 

By the 1970’s churches were forced to hire youth directors/pastor to minister to the young people in the church.  This was a direct result of the formation of the national organizations, Youth for Christ and later Young Life.  Youth ministry is now an establishment of the church. 

Currently, there are about 20 to 25 organizations that are within the mentally challenged sub-culture in the US.  To become more effective, is it necessary for a national, unifying organization and what will it look like?   Read I Corinthians 1:17.

Paul, as the architect of the church, was the catalyst the Holy Spirit used to form new congregations. Paul’s travels are well chronicled by history.  We love to look at the maps of his missionary journeys.   Paul did not see himself as the head of the church but a catalyst who formed small groups, trained leadership and then left. 

 He was an unimpressive man who had a passion for the message of Christ.  The message was his passion.  His persona wasn’t what made people passionate.  Other men, Apollo and Timothy, were the men who came in behind Paul and continued to ignite the people.  They were men with great personalities and drawing power.  They were the champions of the early church.

 In reading The Starfish and the Spider, there is an emphasis on people who are a catalyst and a champion.  Catalysts are connectors.  They bring people together and make connections.  They come into an area, form circles and then leave.   I’ve watched with chagrin as Richard Stimson has given away everything at Special Gathering.  Everything we have is now online.  All you need to do is go and get it.  While our information is copyrighted, it is free to anyone.

In addition, I’ve seen him try repeatedly to connect with other founders of specialized ministries.  Most of them are his friends.  However, almost every founder of a ministry wants everyone to come under his/her ministry.  This is a good thing.  Yet, ministry heads seem to believe in a national ministry, as long as they are the head of this ministry.

Stimson has helped many people, including some ministry heads, to learn about effective ministry and he has been willing to learn from each one of them.  Stimson and our staff have traveled all over the US and Canada to learn from.   He has paid for other ministry heads to come to Special Gathering to see what we do and how we do it. 

Champions are people who will keep the small groups together.  They are men and women who will spend their lives ministering to a city group.  Champions must be raised up and trained.  Special Gathering is beginning an internship program in which we will bring in men and women who will learn what we are doing.  After a year of training, they will go some place else to begin a program within the mentally challenged program.

Is the formation of a national organization an important addition to effective ministry?  Will this be the key to bringing attention to specialized ministries to the church at large?

As I waved good-bye the last group of visitors, new folks were arriving on Friday.  Yesterday, a pastor spoke to a staff gathering about the importance of being willing to have our homes open for visitors. In our society, as ministers of the Gospel,  there are a vast variety of things attached to our job description.  Almost out of necessity, the scriptural mandate to be “given to hospitality” becomes “other duties as assigned.” 

Over the years, hospitality has been one of the delightful aspects of  ministry for my husband and me.  We enjoy sharing our home with others; and we are deliberate to open it to others.  Sure, there are hazards.  Things do go missing.  My husband received many relics from outer space because of his employment with NASA.  These  ranged from slivers of rocks from the moon to pieces of the rope that tethered the astronaut to the vehicle on the first space walk.  These were history-making events and keepsakes.  We treasured them and proudly displayed them on our shelves in the living room.

One day we woke up to realize that almost all of these items had disappeared home along with a few other valuable pieces.  The realization came soon after we discovered a teenager who was a chronic liar slipping one of keepsakes into his pocket.  He, of course, put it back and he never returned to our home. 

We learned to take appropriate precautions; but we also understand the logical risks involved in having many people coming into our home.  Then as the years have passed, at-home hospitality evolved into a pleasant memory of the past for many households.  Perhaps it is because more and more women have entered the marketplace for paying jobs.  A quiet dinner with a couple of friends gathered around our dining room table isn’t as convenient as meeting a few folks at a local restaurant.

However, a few years ago, Special Gathering founder and executive director, Richard Stimson decided to revive the age-old tradition for his programs and suggested that we do the same.  The plan was to invite two families into our home for dinner each week until all the families we serve had been asked to share a meal with us.  He suggested a simple menu and even asked that we take the expenses from the program allowance of our budget.  I believe this may have been one of the most beneficial things we have ever done to garner favor and familiarity with our members and their families.  Even though it’s been years since that initial time, our members still say to me, “Remember when we came to your house for dinner with my mom and dad.”

The scriptures are clear about the importance of the meal and the bonding that happens during the “breaking of bread.”  It is no coincidence that one of the few ordinances that Christ left for us took place during a meal.  More orthodox denominations call it “communion” or by the Greek term, Eucharist (which means “give thanks”).  I was raised in the Christian tradition that called this meal, “The Lord’s Supper.”  I love all these terms because each one speaks of the bonding that takes place over a meal in our homes.

With the demands of my husband’s care, my life is becoming more closed into my house.  Therefore, I’m beginning to look forward to having more people join us in our home.  But my schedule is not ordinary.  Time is such a pressing and demanding commodity in almost all of our lives that it seems almost draconian to say that homes should be opened to our members.  However, the scriptures haven’t changed.  We may need to pray about how we can better implement this important Biblical guide into our ministries.

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