November 2010


For the first time in three years, I’ve been staring at my computer screen with little to say.  It isn’t that there is nothing to share but perhaps nothing appropriate.  There are lots of questions floating around my brain.  However, I have no answers at this point.  My husband had an infection that seeped into his blood, which would’ve killed him had it not been caught quickly.  Because of the emergency nature of last week, I find myself questioning several issues.

  1. While there is no doubt that God is undertaking in our situation regarding my husband’s medical situation, how will I know if it is time to cut back on ministering to others and concentrate more on his increasing needs?
  2. Have the years of preparing for my husband’s decline in health produced enough fruit?  What else could we have done?
  3. How do I effectively prepare for the upcoming years of medical uncertainty?

Because we could not get long-term-care insurance and the cost of this insurance for us was astronomical, we started putting money aside to prepare for this time.   I naively thought that having enough money in the bank would be our biggest concern.  Little did I know that the monetary issue would be one of the least of our concerns.

A good friend who is much younger than I am told me one day, “I never know if my husband will be alive when I come home.”  I understood what she meant.  For the past eight years, that is the reality with which I’ve lived.  I thought that this gave me a leg up in dealing with our particular situation. 

Additionally, working with The Special Gathering has given me insight into the heart, joys and pains of living with people with disabilities.  Yet, last week exposed that I have more inquiries than I have answers regarding what to do when a person’s disabilities increase.  My greatest concern is dealing with the surprises of the past months–a broken leg and hip, then a blood infection. 

Again, lots of questions.  No answers.  Perhaps this is the reality that parents face daily.  I pray that I’m learning the lessons of compassion and endurance that riddle the lives of families with disabilities.  Maybe the Lord is preparing me to be more effective in ministry, rather than the alternative.

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Why does the business premise of the starfish and the spider intrigued me?  Israel demanded a king.  The nation had been a group of loosely connected states that were connected by the Books of the Law which was their core principles.  Judges led them and these men and women were anointed by the Lord and brought forth to lead the people back to the Law.  They did not make laws.

 Every movement of God has been initially driven by small groups of people driven core, Scriptural principle that emboldened them.  These men and women were willing to give their lives for the principles they saw in the Scriptures.  Martin Luther never wanted to leave the Roman Catholic Church.  He wanted to reform the church.  However, the principle of Salvation through grace that he preached unleashed a group of people inflamed with a passion that changed not only The Church but the world.

The Jesus Movement was an organic movement that developed in the 1960’s.  There was no leader.  These men and women were united around the core value that the church had lost the power of the Holy Spirit and God wanted to restore His rightful place in the church.  Whether you agree with their theology, or not, you must agree that their insistence on in-depth study of the scripture, literal interpretation, unity of the body and allowing the power of the Holy Spirit to work in our lives, has changed the church forever.  The praise and worship in the Church as a whole has changed to include singing the scriptures embodies in more contemporary melodies.

 Throughout the history of the church, there are examples of this starfish-like movement.  When the church becomes centralized and stagnated with bureaucracy and swerves from its core values, God raises up a group of committed people who stir the institutions back toward Scriptural principles.

In addition, to this, it closely represents the organizational structure of The Special Gathering.  There are five different corporations, each with its own board of directors, program director, budgets and programs.  These five corporations are divided by geographic locations.

                      A.   South Carolina

                      B.   Jacksonville

                      C.   Volusia (Daytona and DeLand)

                      D.   Brevard (North and Central Brevard)

                      E.    Indian River (South Brevard and Vero)

Our core values are evangelism and discipleship of mentally challenged people.  We are passionate and totally focused on our core values.   The sixth corporation is our mother organization, The Special Gathering, Inc.  Its primary responsibility is to see that the Core Values embodied in each corporation’s Management Instructions are followed.

                 1.  Additionally, we share a bookkeeper.

                 2.  Inc. is responsible for the printing and distribution of CP.

The Executive Director of The Special Gathering, Inc., Richard Stimson, is not a CEO or president of any of the corporations but the pastor.  He has often said that he needs the programs, more than they need him.  15% of each budget goes to support The Special Gathering, Inc.  The executive director sees himself as a servant.

 In the early 1950’s, an organization called the Association of Parents and Friends of Mentally Retarded Children was started by a group of parents.  Many of these courageous men and women fought the professional system.  At that time, the position of the professional community was that children who were mentally challenged should be put into institutions where they  would receive the kind of help that only professional care giver should give.   At the birth of their mentally challenged children, these parents said their babies would not be institutionalized but they would go home and become part of the family.  This grassroots organization would evolve into The Arc.  Read Act 7:57 and 18, Act 8: 1 and 4.

In scattering the church, the Jews thought they were killing it.  However, it had the opposite effect.  It allowed the church to multiply and grow beyond everyone’s wildest imagination.  Paul has been called the architect of the church.  However, the Jerusalem Sanhedrin must be given the credit for populating the church because their actions caused the Church to become a grassroot organization that was widely disseminated. Paul was the Architect because he was the one person that was principally used by God to formulate a cohesive theology. 

Recently, I heard about a book called The Starfish and the Spider.  The premise of this business management book comes from an examination of these two creatures.  A spider has eight legs and one head.  If one of the legs is cut off, the spider is crippled.  If the head is chopped off, the spider is dead.  The spider is totally dependent on the head for survival.  A starfish is a sea creature with 5 to 10 legs.  But there is no head.  There is intelligence.  The intelligence stems from each leg.  The legs work cooperative to feed and procreate.

Should a leg of a starfish be cut off, it will not kill the starfish.  It will simply grow a new leg.  Additionally, the detached leg will then become a new starfish.  The authors contend that most businesses are formed like spiders and therefore when the markets turn or the head is ineffective, the business dies.

Conversely, newer, highly successful Internet businesses are being formed more like a starfish.  They are loosely connected entities enabled by the Internet that share a core philosophy; but they are able to function independently.  They may or may not have a head person.  Usually, this person is a facilitator, rather than a president or CEO.

More to come…

Time in a hospital either moves squeakingly slow or screams rapidly ahead like a run-away Palomino. When the doctors and nurses are feverishly working to save a life, time advances with such speed that it’s impossible to comprehend all the details of what is happening.  On the other hand, after the immediate crisis is met, it is as though time stops.

For many years, my husband was disgustingly healthy. Even though he was born with a hidden disability that surfaced when he was three years old, he was able to move and work without any interference from his “ugly gait.”

In the past 15 years, he has wheeled his chair slowly into the world of hospitals, doctors and therapists. In 2010, we have been immersed with medical procedures, medical miracles and medical mistakes. Sitting in my husband’s hospital room looking out the window, I can see the people move in and out of the hospital entrance.  After living through another day of emergency procedures that saved his life, I’m reminded that hospital time often occupies much of the life of a family with a child who is born with a disability.

The most frustrating part must be that the family totally loses control once they place their child into the hands of the doctors and nurses.  Parents know their children with disabilities inside and out; but they may or may not be consulted once they enter the hallowed grounds of the medical world.  I can imagine that a sense of relief must fill them once they walk into the emergency room; only to be replaced with the frustration of not being allowed to contribute important information that the medical professionals probably need. 

Several months ago, I sat with a caregiver who had taken care of a woman for about ten years.  Now her friend and companion was dying.  The caregiver wasn’t allowed to go back into the emergency room because she was not a family member.  I went to the attendant at the desk and asked why the caregiver could not go back into the room with her friend.  “She is the only family Sarah has.  She has given her life to Sarah for the past ten years.  She wants to be in the room and she deserves to be in the room.” 

The efficient attendant blankly looked at me and said, “She isn’t a family member.”

“She is the only family Sarah has, ” I repeated.  “I’m Sarah’s pastor and her friend needs to be with Sarah.”

“Okay,” she acquiesced.  “I’ll see what I can do.”

Within a few minutes, the caregiver was with Sarah.  In less than 15 minutes, Sarah’s heart stopped and she took her final shallow breathe.  I believe Sarah was waiting for her friend to arrive.  The tender words and moments of reassurance spoken by the caregiver helped Sarah to gently pass into the arms of her loving Father.

Again, I saw that at times the position of a ministry leader within the disability and mentally challenged community may to give voice to and advocate for the rights and desires of the family.  As Sarah gently slid away from us, the caregiver touched my arm and said, “Thank you.”   She had not been confident enough in her place to ask to be with her friend.  But she was grateful that I had helped the hospital see where her rightful place should be.

The thriving and growing Joy Fellowship in Vancouver, Canada has had three leaders.  The founder of the ministry was David Hayward.  He was a returning missionary from India who was blocked from returning because of restrictions from the Indian government.  While waiting for directions from the Lord regarding their future assignments, he and his wife, Ruby,  discovered the mentally challenged sub-culture in Vancouver was without a Christian witness or voice.  He and Ruby poured their lives, resources and faith into evangelizing and disciplining this important but forgotten people’s group for many years.

Their son, David (Dave) Hayward, Jr., loved the ministry and the people who are developmentally disabled; but “I sure wasn’t my father,” Hayward recounts.  Neither of the men are fiery or robust.  However, Dave’s personality and style of teaching was much more layed-back than his father’s preaching.  Finally, Dave moved away from the Vancouver area and continued his public school teaching career. 

David, Sr. understood Dave’s position and never pushed his son to become a valued volunteer.  However, David, Sr. knew that he must replace himself.  After prayer, he realized the Lord had chosen a young woman whose style and passions were much like his own.  Interestingly, her name was Joy…Joy Gregory. 

Ms. Gregory introduced her interests for crafts and camping into the ministry.  Tent camping became a vital part of the discipleship program.  Crafts were used to help the members develop their individual talents and raise funding for the ministry.  After several years, Ms. Gregory began looking for a person to compliment her style of ministry.  She, at once, thought of Dave.  After a lot of convincing, Dave moved back to Vancouver and became her associate.  For years, they worked together, complimenting each other with their own unmatched brand of ministry.

After a time, Dave realized that he didn’t have to be his father.  He found that he was able to effectively bring his particular brand of teaching and anchor it into the ministry that had been birth by his father and fostered by Ms. Gregory.  When Joy contracted cancer, Dave was her logical replacement.  He had been released from the past concerns of having to be his father’s duplicate.  By the time of her death on June 9, 2007, Dave was comfortable enough to be able to step into Joy Gregory’s hiking boots and carry forward the Joy Fellowship ministry.

Timothy was put in the position of following his adopted father, Paul, as pastor in Ephesus.  These were large sandals to fill.  Additionally, Timothy was a young man and not seasoned in ministry.  From the Biblical accounts, he was sickly and timid.  Becoming the senior pastor of a large metropolitan church is a difficult position.  But to replace a founder whose aptitude and personality was diametrically different from his own was a great challenge for this young pastor.  However, Timothy grew the church and almost four decades later, it was still a vibrant church.  Of course, there were problems and some of them could have stemmed from Timothy’s own personality.  However, Paul and Timothy were wise enough to NOT expect Timothy to be Paul.

Replacing the founder of a ministry or a successful pastor of a ministry within the mentally challenged community may be the specter looming in the background of each ministry within this sub-culture.  However, Paul found that Timothy was able to bring his unique talents and perspective into the Ephesus church, just as Dave Hayward has effectively replaced Joy Gregory.

The Networks Self-Advocates traveled to Tallahassee to see the Florida legislators.  Here is several links to some of the articles their visit engendered.  The two people holding the sign are self-advocates from Titusville.

http://m.floridatoday.com/news.jsp?key=361250&rc=ne

http://miamiherald.typepad.com/nakedpolitics/2010/11/as-senate-opens-medicaid-reform-hearings-potential-clients-worry-about-hmos.html

http://www.tallahassee.com/article/20101118/CAPITOLNEWS/11180322/Lawmakers-take-on-Medicaid-reforms
http://floridacapitalnews.com/article/20101118/CAPITOLNEWS/11180322&theme=
http://staugustine.com/news/local-news/2010-11-18/lawmakers-mull-medicaid-overhaul
http://floridaindependent.com/15175/lawmakers-weigh-plans-for-medicaid-overhaul
http://www.pnj.com/article/20101118/NEWS01/11180320/Legislators-dive-into-Medicaid-reform

FLORIDA UNITED FOR CHOICE –

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WHY INCLUDING THE DEVELOPMENTALLY DISABLED OF FLORIDA INTO AN HMO MODEL IS NOT GOING TO WORK:

*We are fundamentally opposed to the aspect of Medicaid Reform that entrusts the coordination and care of the developmentally disabled of Florida to Health Maintenance Organizations (HMO’s). The current system of identifying, providing, overseeing, and funding of needed supports and services to the disabled of the state involves thousands of private contract HCBS Medicaid Waiver support and service providers who advocate for the needs of their caseloads and strive to get the needs of the developmentally disabled citizens of the State met. These providers work in concert with the state’s Agency for Persons with

Disabilities (APD) playing a significant role in quality assurance and oversight of the system. Surrendering the entire service system over to contracted HMO’s would eliminate choice, eliminate adequate oversight, and it would create a system nearly impossible for a developmentally disabled citizen and/or their family to navigate. Our reasons for opposing an HMO take over of the support and services system for the developmentally disabled of Florida are:

HMO is Not the Model That Best Serves the Developmentally Disabled Population

*There is something fundamentally different about being developmentally disabled versus any other kind of public assistance recipient — HMO is not geared for them.*

  • · Developmentally disabled (“DD”) recipients had absolutely no choice being born with their conditions and situations. They made no mistakes, errors in judgment and the nature of their assistance is hardly ever temporary.
  • · They will need life long care and support from an established cadre of specialized providers knowledgeable in DD issues. This care involves much more than merely medical concerns.
  • · There are social, self-care and self-advocacy issues that are unique to them. Many are non-verbal and nearly all could not successfully understand and navigate an HMO’s 1-800 number access system nor be able to advocate for their own needs effectively against an HMO’s opposition to funding services. Disabled people are easily intimidated and confused. Frequently they are cared for by highly stressed single caregivers. Yet they are lumped together with non-disabled welfare recipients.
  • · 30,000 people with disabilities and their families including over 2.7 million other voting Floridians will be negatively impacted. HMOs and PPNs are based on a medical model not on the special needs of DD consumers.

 

CHOICE

The thousands of service providers in the current system are hired and fired by the recipients of services THEMSELVES.

  • · In other words, the disabled of Florida now have the greatest choice in the freest fair-market system anywhere in the country. They have an independent case manager–a Support Coordinator whom they can hire and fire–whose overriding responsibility is to advocate for their preferences, help them identify their needs, and then assist them in navigating many complex service systems.
  • · When a disabled recipient is unhappy with the service provider (Support Coordinator, Respite provider, Companion, etc.), they can immediately terminate them and then be assisted in interviewing and locating a replacement provider that will best meet their needs.
  • · Going to an HMO model would eliminate this choice-based fair-market model. It would require them to rely on an HMO-funded case manager—a case manager WITHIN the HMO itself to push for support and service approvals and navigate the HMO’s complex requirements for these service approvals. In other words the HMO-funded case manager would be tasked with advocating against his own employer on behalf of the disabled person. This represents a debilitating conflict of interest as the HMO’s essential concern is profit and that case manager works for them. HMO’s have no established history of dealing effectively with this inherent conflict.
  • · A developmentally disabled recipient would essentially go from a model offering thousands of providers to a small handful. Opting for an HMO take-over of services for the developmentally disabled of Florida removes choice for these citizens and needlessly eliminates the highly specialized providers that these disabled individuals have known for years, come to trust, and who have developed an accurate and effective understanding of them and their needs. *This is a process that takes years with this population and equates in many cases to their avoiding institutionalization. Eliminating the independent provider system in favor of approximately 4 HMO’s carving up the state eliminates the current independent advocate provider system. This represents removing independent third party advocacy for the most vulnerable, poor and disabled population of the state.

Fiscal Responsibility:

It is understood that the state is in difficult financial times and that spending must be reduced.

  • · The developmentally disabled of Florida and their caregivers as well as the provider system that works for them understand the need for a sustainable system. The current Agency for Persons with Disabilities

(APD) and HCBS Medicaid Waiver systems afford the state an effective infrastructure to enforce accountability and compress funding when times are tough.

  • · Rather than paying HMO’s a fully-funded contract UP FRONT for five years, the current system allows the state to enact reductions at any time until the economic situation improves. Simply put, the current system allows the Florida state government real, dynamic flexibility. (*You can tear pages out of the

Waiver Services Handbook but keep the book so that when you can you add those pages BACK IN.)

  • · The current ‘Tier system’ places recipients into capped budgets. This is a ready infrastructure that allows you to decrease budgets for individuals receiving services when you have no other choice because of the economic situation. And again, when the budget improves, you can increase the Tier budgets for recipients.
  • · Once in a contract with an HMO you are stuck with that system for 5 years, regardless of how well or poorly the HMO performs. Historical data throughout the history of HMO’s in this country shows it is extremely difficult and costly to recoup funding from them when improprieties are discovered.

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