April 2008


Pat is a young woman with Downs Syndrome.  She is short and stocky with black hair.  She doesn’t often smile or express herself.  Her words are few. When I first met her, I imagined it was because she was lower functioning but later I realized it was her particular personality.  She is a quiet person, thoughtful and concerned.  Raised in a Christian home, her parents had taught her well the ways of the Lord. 

Her mother, Maurene, shared with me an incident that brought the grief of Pat’s disability back to the forefront of her mind.  It was after the wedding of Pat’s brother.  The mother of the bride came weeping and squalling to Maurene.  “You’re so lucky,” she said between her convulsive tears.  “You’ll always have Pat.  You’ll never have to go through this painful time of giving her away.”

Maurene looked the woman in the eye, “Have you lost your mind?” she bluntly asked from shock.  “This is the normal process of life.  This is part of a normal passage from childhood to adulthood–weddings, having her own home, children, grandchildren, great-grandchildren.  With Pat, I have never known and I will never know the joy of normal.”

The Patriarch Jacob was a man who didn’t have a normal passage from childhood to adulthood. He had tricked his father and brother, Esau, and now he was suffering the consequences.  Sleeping alone on a lonely road, running for his life, Jacob had a dream.  God came to him and told Jacob that he would be with Jacob.  God promised to bless Jacob with many children and that he assured Jacob that he would come back to this land.  God promised to give the land to Jacob.

God said, “I am the Lord, the God of Abraham, your grandfather and the God of Isaac.  I will give you and your descendants the land on which you are now sleeping.  Your descendants will be as many as the dust of the earth” (Genesis 28:13 and 14 NCV).

But God in this verse says, “I AM.”  He is a God of the present. His name is I AM–always living in the present.  Whether we are living with disabilities or not, the joy of living comes from imitating God by treasuring today. 

As youth, we usually live in the future.  Penning all our hopes and dreams on what will happen and what is to come.  As we become adults and adjust to old age, we begin to live in the past.  The old days are the best and so we live with our children when they were small and friendships were young and vibrant.  But whether we are young or old, God desires us to live in the present.

Yet on the other hand, God is also the master of the future.  He told Jacob, “I’ll give you and your children…”  We don’t have to fear the future while we are living in the present because God holds the future–our future–in his mighty hands.  I think the greatest comfort I am able to give my members is to assure them that God sees their future.  Most of our members live with the uncertainties of a future without their parents.  Looming in their minds is the spectre that inquires with sinister doubts, “What will happen to me when my parents are gone?”

God also reminds us as he reminded Jacob, he is the God of the past.  He said, “I am the God of Abraham and Isaac.”  Jesus said at the Last Supper, “Remember me.”  While we must live in the present, memories are to be cherished.  We must learn from the lessons of the past while never losing grasp of today.  

Maurene has helped Pat to live today.  And perhaps that is the only normal way to live.

What is the one thing that your members seem to be concerned about?  Are you able to address it?  Do you reassure them that God will take care of them as he did in the past?  What are some tricks you use to help you stay centered in the present?

Thanks to Wonderful Aaron Nangle from WaiverProvider.com .  Here is a simplier, more user friendly explanation of the 4-tier Waiver.  If you haven’t connected with WaiverProvider.com , be sure and check out his fine on-line newsletter.  You can subscribe to the newsletter; and it will be sent to you automatically.   By the way, to hopefully simplify,  this is a three entry post.  You will find part 2 and part 3 after this post.  Nangle gets all the credit for all the work.

Tier 4        $14,792

 

(Most Kids and People Who Only Have The FSL Waiver)

 

  Right Now Has-  The FSL/ Florida Supported Living Waiver. 

OR

– Is under 22, AND lives in a family home. 

OR

– Is a dependent child who lives in a group home setting.

 

 

*** Most kids will be in this tier.  See other tiers for intensive behavior and/or medical needs.  ****

 

 

 

 

 

 

Tier 3                $35,000

 

Is 21 or Older AND (must meet one)

-Lives in a group home setting.

-Gets in home supports in their OWN HOME. (supported living environment)

– Gets Personal Care Assistance (PCA) at the MODERATE rate.

– Gets Skilled or Private Duty Nursing.

– Gets A Therapy Service (Occupational Therapy, Physical Therapy, Speech Therapy, or Respitory Therapy. 

 

OR

– Gets Behavior Analyst and/or behavior assistant service and is 22 or older. 

Or

– Gets More than 60 hours a month of behavior analyst and/ or behavior assistant service.

Tier 2       $55,000

 

– Gets Residential Habilitation services 5 or more hours per day.

 

Or

 

  Gets Supported Living AND  6 or more hours per day of in home supports. 

 

 

 

 

 

 

 

 

Tier 1     No Cap At This Time

 

NEEDS CAN NOT BE MET IN OTHER TIERS!  (essential for avoiding institutionalization)

 

Behavioral Needs That exceed what can be met in the other tiers.   (A substantial risk of harm to themselves or others.)

 

Residential Habilitation At:

   – Behavior Intensive

     Behavior Focus

   – Standard at Extensive 1 or Higher

   – Special Medical Home Care

   – Nursing. 

 

Tiers will be determined after considering the following:  QSI score, Service Needs, Age and Current Living Setting, and Availability of Natural Resources. 

 

Tiers Change if there is a significant change in circumstances and/or condition that affects health, safety, and/or  well being. 


 These are talking points that came on APD stationary via Aaron Nangle.  Not too easy to understand but you can see how much work Nangle had to do make it clear for us.

 

 

Talking Points on Tiers

 

  • The Agency for Persons with Disabilities (APD) is committed to protecting the health and safety of the people it serves by helping them receive the services they need.
  • Over the past year, there have been many changes to the Medicaid waiver program.  The changes have been difficult for both APD customers and employees.
  • Last year, the Legislature changed the law to require a four-tier waiver system for individuals receiving Medicaid Waiver services from APD. 
  • The Legislature created four waiver tiers for people who receive services under the Developmental Disabilities Waiver, the Family and Supported Living Waiver, or the Consumer Directed Care Program.  The Legislature also created eligibility criteria for the waivers. 
  • APD is developing a rule that will help assign customers to a tier as required by the Legislature.
  • APD is currently identifying the likely tier for each client.  APD plans to notify customers of their tier assignment by the end of May.  
  • The Legislature imposed annual limits on how much the state will spend for services for people in three of the tiers. 
  • The Legislative limits are:  Tier 1 – no limit; Tier 2 – $55,000; Tier 3 – $35,000; and Tier 4 – $14,792.
  • Most people will not be affected by their tier assignment.  But for some people, the tier assignment will mean that the state will not be able to pay as much for services as it has in the past. 
  • If a customer’s Tier Waiver assignment results in a spending limit lower than the amount that is annually spent on services, he or she should work with their support coordinator to prioritize the services in his or her cost plan so they do not exceed the limit and that the services most important are supported. 
  • APD is supplying waiver support coordinators with information on how to help customers in prioritizing their cost plan to stay within the spending limit, if necessary. 
  • APD plans to implement the Tiers July 1, 2008.
  • The Agency for Persons with Disabilities has additional information about the Tier Waivers on its Web site (http://apd.myflorida.com).  Contact your Waiver Support Coordinator or the local APD office if you have questions.

Proposed Specific Criteria for Waivers

Tier 1 Waiver (Currently the Developmental Disabilities Waiver)

·      The individual has intensive medical or adaptive needs that are essential for avoiding institutionalization, and the individual’s needs cannot be met in Tier Waivers 2, 3, or 4; or

·      The individual has behavioral problems that are exceptional in intensity, duration, or frequency and present a substantial risk of harm to themselves or others, and the individual’s needs cannot be met in Tier Waivers 2, 3, or 4.

 

Tier 2 Waiver (A new waiver capped at $55,000 a year)

·      The customer’s service needs include placement in a licensed residential facility and authorization for greater than five hours per day of residential habilitation services; or

·      The client is in supported living and is authorized to receive more than six hours a day of in-home support services.

 

Tier 3 Waiver (A new waiver capped at $35,000 a year)

·      The customer resides in a licensed residential facility and is not eligible for the Tier One Waiver or Tier Two Waiver; or

·      The client is 21 or older, resides in their own home and receives live-in, In-Home Support Services, and is not eligible for Tier One Waiver or Tier Two Waiver; or

·      The customer is 21 or older and authorized to receive Personal Care Assistance services at the moderate level of support as defined in the Developmental Disabilities Handbook; or

·      The client is 21 or older and authorized to receive Skilled or Private Duty Nursing Services and not eligible for the Tier One Waiver or Tier Two Waiver; or

·      The customer is 22 or older and is authorized to receive services of a behavior analyst and/or a behavior assistant.

·      The client is under the age of 22, and authorized to receive the combined services of a behavior analyst and/or a behavior assistant for more than 60 hours a month and is not eligible for the Tier One Waiver or Tier Two Waiver.

·      The customer is 21 or older and authorized to receive at least one of the following services: Occupational Therapy, Physical Therapy, Speech Therapy, or Respiratory Therapy.

 

Tier 4 Waiver (Formerly the Family and Supported Living Waiver, capped at $14,792 a year.) 

·      Clients who are currently assigned to receive services through the Family and Supported Living Waiver unless there is a significant change in condition or circumstance.

·       The total budget in a cost plan year for each Tier Four Waiver client shall not exceed $14,792 per year.

·      Customers who are not eligible for assignment to the Tier One Waiver, Tier Two Waiver, or Tier Three Waiver shall be assigned to the Tier Four Waiver.

·      Customers who are under the age of 22 and residing in their own home or the family home.

·      Clients who are dependent children who reside in residential facilities licensed by the Department of Children and Families.

 

 

 

Modified April 24, 2008

Again, thanks to Aaron Nangle from WaiverProvider.com , here is a continuation of his explanation of the four-tier waiver.  Be sure and visit his website and thank him for all this hard work.

 

The first column is based on Tier 4 plans,

The second on Tier 3 plans

The third on tier 2 plans. 

Notice that many go over, with just the basics. 

 

Sample Cost Plans

– Based On Limited Support Coordination of $67.50 Month

– Based on Transportation at $10.00 Per Trip

– Based on Agency Rates, With No Geographic Factors. 

– Maximum Respite is 300 hours per year. 

Add $810.00

For Full Support Coordination

Add $2016.00

For 1-5 ADT. 

Add $3885.44

 For 1 hour per week of Level 2 Behavior Services. 

Look At These Cost Plans.  What happens when we have to add diapers, medication review, dental, full support coordination, or behavior therapy?

1.  Limited S.C.

2.  Maximum Respite

3.  ADT 5x Week

4.  Transportation

Total Cost = $16,710.00

1.  Limited S.C.

2.  Companion 5 x week

 

 

Total Cost  = $23,461.20

1.  Limited S.C.

2.  SL Coach, 20 hours month

3.  SE Coach, 20 hours month

 

Total Cost = $18,608

1.  Limited S.C.

2.  PCA, 2 Hours per day

3.  ADT 5x Week (Moderate)

4.  Transportation

5.  Maximum Respite

Total = $31,072.88

1.  Limited S.C.

2.  ADT, 5x week

3.  Transportation

4.  In home supports, 3 hours per day.

5.  SL Coach, 20 hours month

Total = $38,246.40

1.  Limited S.C.

2.  Companion 5x week

3.  PCA, 3 hours day

 

 

Total = $41,981.52

1.  Limited S.C.

2.  Moderate Res. Hab.

3.  ADT 5x Week

4.  Transportation

Total Cost =  $54,432.00

1.  Limited S.C.

2.  Moderate Res Hab.

3.  Companion 5x week

 

Total Cost = $65,083.20

1.  Limited S.C.

2.  In Home Supports, Day Rate, 365 days year

3.  SL Coach 20 hrs month

Total Cost = $54,939.05

 

How to be an Amazing Person

Luke 2:47

Central Theme: As a child Jesus was amazing and he can change you into an amazing person.

 

Introduction

Come out with sweats and fighting gear. Put out a sign, “World Wrestling Federation’s Newest and Finest–Linda the Amazing.” Have a volunteer accompany me out and have him/her prime the group to cheer and clap. Say while taking off the sweat band on my head, “Wait a minute. Maybe there is a better way for a grandmother (or pastor, or father, or teacher), like me, to be amazing.”

I. The Bible tells us that we can all be amazing people.

    A. Have a member read Luke 2:47.

    B. Tell the story of Jesus as a boy.

        1. The family went to Jerusalem

        2. Jesus was left

        3. He was with the teachers and lawyers and they thought he was an amazing person.

        4. They could not believe that a young boy would know as much as he knew.

     C. But the story does not end there.

        1. After Jesus was resurrected, the teachers and lawyers were amazed at the followers of Jesus.

        2. These simple fishermen gave them amazing answers.

        3. These followers were so smart and–yes, amazing–that everyone knew that they had been with Jesus.

II. Do you want to be an amazing person–someone people respect and look up to.

    A. It is hard.

        1. There is always someone smarter than you are.

        2. There is always someone who can do better work.

    B. But God can help us to be amazing people

III. It is a supernatural thing.

    A. You won’t be smarter–but you will have the right answers.

    B. You won’t be cuter but people will think you are.

    C. You will not lose your disability but people will begin to define you by your wisdom and what you can do rather than what you cannot do.

Conclusion–I think it’s too late for me to be The Amazing Linda with WWF but I can be amazing because of my love for Jesus. He will change me into an amazing person. 

 

 This is a letter we received from the Family Care Council.  Interesting!

Family Care Council

Agency for Persons with Disabilities

Patty Houghland, Chairperson

pattyhoughland@cox.net

www.fccflorida.org 

 

April 24, 2008

Family Care Council Florida wants to go on record with the following comments on the TIER rule:

We did not have input to the Tiers and do not believe they serve individuals with developmental disabilities well. We recognize, however, that they are in statute and at this time are to be implemented. We believe an individual budget based on a valid assessment is a preferred method of controlling cost and encourage the APD to work to that end. Since that is not what we have at this point in time, and we must work with these TIERS, the FCCF comments are as follows.

Page 2-“65G-4.0021 TIER Waivers (3)-The total billings in any quarter of the state’s fiscal year for any service a client is authorized to receive shall not exceed twenty-five percent (25%) of the total annual cost plan budget for that service.” Family Care Council Florida objects to this provision. We believe it will have many unintentional consequences such as:

• Ensure that individuals will spend all of their funding in the cost plan. It is the practice of use it or lose it.

• Prohibit one-time expenditures because it would all occur within one quarter.

• DME and technology tools would be prohibitive because you would have to spread the cost throughout the fiscal year and a vendor would not be inclined to do that

• Penalize individuals and families as life issues occur.

This restriction assumes the lives of individuals with disabilities happen in quarters, which is ridiculous of course. Dental emergencies, acute illness of an individual or caregiver, equipment needs, or let’s look at respite as a service. A family planning a special vacation that does not include their individual with a disability could only use one quarter of the respite time they have in the plan. That seriously limits what the family is able to do. They would have to ask for increased respite for the year in order to have enough available for spending in one quarter to cover the vacation for that year. This would give the individual a lot more respite than needed and may take away from another necessary service. It penalizes the individual or the family needlessly due to rule that allows only ¼ at a time. We see no benefit to this provision, but we do see a lot of unintended negative

 
 
 
 
 
 

 

 
I received an email with an APD Power Point presentation that was supposed to explain the Four-tier Waiver.  However, it was actually pretty difficult to understand.  Then I received this from someone in the APD office.  I think it is more understandable.
Notice of Proposed Rule

 

RULE NO: RULE TITLE
65G-4.0021: Tier Waivers
65G-4.0022: Tier One Waiver
65G-4.0023: Tier Two Waiver
65G-4.0024: Tier Three Waiver
65G-4.0025: Tier Four Waiver
PURPOSE AND EFFECT: To comply with Section 393.0661(3), F.S., requiring the Agency to implement a four-tiered waiver system to serve clients with developmental disabilities.
SUMMARY: Section 393.0661(3), F.S., requires that the agency shall assign all clients receiving waiver services through a developmental disabilities waiver to a tier based on a valid assessment instrument, client characteristics, and other appropriate assessment methods. These rules will implement that requirement.
SUMMARY OF STATEMENT OF ESTIMATED REGULATORY COSTS: No Statement of Estimated Regulatory Cost was prepared.
Any person who wishes to provide information regarding a statement of estimated regulatory costs, or provide a proposal for a lower cost regulatory alternative must do so in writing within 21 days of this notice.
SPECIFIC AUTHORITY: 393.0661(3) FS.
LAW IMPLEMENTED: 393.0661(3) FS.
A HEARING WILL BE HELD AT THE DATE, TIME AND PLACE SHOWN BELOW:
DATE AND TIME: April 24, 2008, 1:00 p.m. – 4:30 p.m.
PLACE: Agency for Persons with Disabilities, Conference Room 301, 4030
Esplanade Way, Tallahassee, FL 32399
Pursuant to the provisions of the Americans with Disabilities Act, any person requiring special accommodations to participate in this workshop/meeting is asked to advise the agency at least three hours before the workshop/meeting by contacting: Linda Mabile, Bureau Chief, through Deb Blizzard at (850)921-4189. If you are hearing or speech impaired, please contact the agency using the Florida Relay Service, 1(800)955-8771 (TDD) or 1(800)955-8770 (Voice).
THE PERSON TO BE CONTACTED REGARDING THE PROPOSED RULE IS: Linda Mabile, Bureau Chief, through Deb Blizzard at (850)921-4189

THE FULL TEXT OF THE PROPOSED RULE IS:

65G-4.0021 Tier Waivers.

(1) The Agency for Persons with Disabilities will assign clients of home and community-based waiver services for persons with developmental disabilities to one of the four Tier Waivers created by Section 393.0661, Florida Statutes (2007). The Agency will determine the Tier Waiver for which the client is eligible and assign the client to that waiver based on the developmental disabilities waiver criteria and limitations provided in Chapters 393 and 409, F.S., Rule Chapter 59G-13, F.A.C., and this rule Chapter and the Agency’s evaluation of the following information:

(a) The client’s level of need in functional, medical, and behavioral areas, as determined through Agency evaluation of client characteristics, the Agency approved assessment process, and support planning information;

(b) The client’s service needs as determined through the Agency’s prior service authorization process to be medically necessary;

(c) The client’s age and the current living setting; and

(d) The availability of supports and services from other sources, including natural and community supports.

(2) The services described by the Developmental Disabilities Waiver Services Coverage and Limitations Handbook, July 2007 (hereinafter referred to as the “DD Handbook”), adopted by Rule 59G-13.080, F.A.C. and incorporated herein by reference, are available to clients of the Developmental Disabilities Waiver (hereinafter called “the Tier One Waiver”), the Developmental Disabilities Tier Two Waiver (hereinafter called “the Tier Two Waiver”), and Developmental Disabilities Tier Three Waiver (hereinafter called “the Tier Three Waiver”). The following services described in the DD Handbook are available to clients assigned to the Tier Four Waiver (presently known as The Family and Supported Living Waiver):

(a) Adult Day Training;

(b) Behavior Analysis;

(c) Behavior Assistance;

(d) Consumable Medical Supplies;

(e) Durable Medical Equipment;

(f) Environmental Accessibility Adaptations;

(g) In-Home Support Service;

(h) Personal Emergency Response System;

(i) Respite Care;

(j) Support Coordination;

(k) Supported Employment;

(l) Supported Living Coaching; and

(m) Transportation.

(3) The total billings in any quarter of the state’s fiscal year for any service a client is authorized to receive shall not exceed twenty-five percent (25%) of the total annual cost plan budget for that service.

(4) For all Tiers client must utilize all available State Plan Medicaid services including, but not limited to, personal care assistance, therapies, and medical services, that duplicate the waiver services proposed for the client. A client shall not be provided waiver services that duplicate available State Plan Medicaid Services including, but not limited to, personal care assistance, therapies, and medical services.

(5) The Agency will review a client’s tier eligibility when a client has a significant change in circumstance or condition that impacts on the client’s health, safety, or welfare or when a change in the client’s plan of care is required to avoid institutionalization. The information identifying and documenting a significant change in circumstance or condition that necessitates additional or different services must be submitted by the client’s Waiver Support Coordinator to the appropriate Agency Area office for determination.

(6) This rule shall take effect July 1, 2008.

Specific Authority 393.0661(3) FS. Law Implemented 393.0661(3) FS. History–New 7-1-08.

 

65G-4.0022 Tier One Waiver.

(1) The Tier One Waiver is limited to clients that the Agency has determined meet at least one of the following criteria:

(a) The client’s needs for medical or adaptive services cannot be met in Tiers Two, Three, and Four and are essential for avoiding institutionalization, or

(b) The client possesses behavioral problems that are exceptional in intensity, duration, or frequency with resulting service needs that cannot be met in tiers Two, Three, and Four, and the client presents a substantial risk of harm to themselves or others.

(2) Clients living in a licensed residential facility receiving any of the following services shall be assigned to the Tier One Waiver:

(a) Intensive behavioral residential habilitation services;

(b) Behavior focus residential habilitation services at the moderate or above level of support; or

(c) Standard residential habilitation at the extensive 1, or higher, level of support; or

(d) Special medical home care.

(3) Nursing service needs that can be met through the Tier Two, Tier Three, or Tier Four Waivers are not “services” or “service needs” that support assignment to the Tier One Waiver.

(4) This rule shall take effect July 1, 2008.

Specific Authority 393.0661(3) FS. Law Implemented 393.0661(3) FS. History–New 7-1-08.

 

65G-4.0023 Tier Two Waiver.

The total budget in a cost plan year for each Tier Two Waiver client shall not exceed $55,000. The Tier Two Waiver is limited to clients who meet the following criteria:

(1) The client’s service needs include placement in a licensed residential facility and authorization for greater than five hours per day of residential habilitation services; or

(2) The client is in supported living and is authorized to receive more than six hours a day of in-home support services.

(3) This rule shall take effect July 1, 2008.

Specific Authority 393.0661(3) FS. Law Implemented 393.0661(3) FS. History–New 7-1-08.

 

65G-4.0024 Tier Three Waiver.

(1) The total budget in a cost plan year for each Tier Three Waiver client shall not exceed $35,000. A client must meet at least one of the following criteria for assignment to the Tier Three Waiver:

(a) The client resides in a licensed residential facility and is not eligible for the Tier One Waiver or the Tier Two Waiver; or

(b) The client is 21 or older, resides in their own home and receives Live-in In-Home Support Services and is not eligible for the Tier One Waiver or the Tier Two Waiver; or

(c) The client is 21 or older and is authorized to receive Personal Care Assistance services at the moderate level of support as defined in the DD Handbook.

(d) The client is 21 or older and is authorized to receive Skilled or Private Duty Nursing Services and not eligible for the Tier One Waiver or the Tier Two Waiver; or

(e) The client is 22 or older and is authorized to receive services of a behavior analyst and/or a behavior assistant.

(f) The client is under the age of 22 and authorized to receive the combined services of a behavior analyst and/or a behavior assistant for more than 60 hours per month and is not eligible for the Tier One Waiver or the Tier Two Waiver.

(g) The client is 21 or older and is authorized to receive at least one of the following services:

(i) Occupational Therapy; or

(ii) Physical Therapy; or

(iii) Speech Therapy; or

(iv) Respiratory Therapy.

(2)  This rule shall take effect July 1, 2008.

Specific Authority 393.0661(3) FS. Law Implemented 393.0661(3) FS. History–New 7-1-08.

 

65G-4.0025 Tier Four Waiver.

(1) The total budget in a cost plan year for each Tier Four Waiver client shall not exceed $14,792 per year.

(2) Clients who are not eligible for assignment to the Tier One Waiver, the Tier Two Waiver, or the Tier Three Waiver shall be assigned to the Tier Four Waiver. The criteria for the Tier 4 Waiver includes, but is not limited to:

(a) Clients who are currently assigned to receive services through the Family and Supported Living Waiver unless there is a significant change in condition or circumstance as described in subsection 65G-4.0021(4), F.A.C.; or

(b) Clients who are under the age of 22 and residing in their own home or the family home, or

(c) Clients who are dependent children who reside in residential facilities licensed by the Department of Children and Families under Section 409.175 F.S.;

(3) This rule shall take effect July 1, 2008.

Specific Authority 393.0661(3) FS. Law Implemented 393.0661(3) FS. History–New 7-1-08.

NAME OF PERSON ORIGINATING PROPOSED RULE: Linda Mabile, Bureau Chief, Home and Community-Based Services
NAME OF SUPERVISOR OR PERSON WHO APPROVED THE PROPOSED RULE: Jane E. Johnson, Director, Agency for Persons with Disabilities
DATE PROPOSED RULE APPROVED BY AGENCY HEAD: March 19, 2008
DATE NOTICE OF PROPOSED RULE DEVELOPMENT PUBLISHED IN FAW: December 7, 2007

When Sally met Matthew, she said she loved him from the first.  Of course, Sally had never had a man give her any attention all of her 30 years.  A petite blonde, she had lived in a small town in North Carolina.  Her parents had protected her to the point that she wasn’t even able to go to a sheltered workshop to work.  Then tragic events brought her to our county to live with a distant relative that she had only met one time. 

After several years, the relative was overwhelmed with the responsibilities of a young woman with Downs Syndrome.  She turned to a local agency for help.  Sally was able to obtain a placement in a group home.  Within a few months, Sally was moved into an apartment.  Matthew lived in the apartment across the hall from Sally.  He was an experienced young man who understood how to win Sally’s heart.

Unfortunately, Matthew was the victim of abuse in his family.  Therefore, he proceeded to abuse Sally, beating her badly after their sexual encounters.  Because Matthew was also a mentally challenged individual and Sally refused to press charges against the man she loved, Matthew was never arrested or paid any price for his brutal beatings.

It is a well-known psychological fact that victims of abuse become abusers.  While we hate to admit it, this fact is true within the mentally challenged community, also.  While the story of Sally and Matthew is ugly and rare, it is true.  Perhaps the blame rests on the professional community, who believed that the indisputable principle of choice was more important than safety.  Perhaps it was the fault of APD who encourages the placement of people into apartments, whether they are ready for that move or not. 

It would seem obvious that Sally wasn’t prepared to handle Matthew’s advances.  Yet, she wasn’t moved from the apartment complex or given the kind of protection that she needed.  Perhaps, it is the fault of politicians, who can’t seem to find the money to provide funding for our most vulnerable citizen.  Perhaps it is the fault of an entie society who discount the value of mentally challenged people.

Perhaps, there are too many people who cling to a faulty and unsafe philosophy to point fingers to any one set of people.  Could it be that there are so many problems involved in the system that there is no good solution?  This is why we at The Special Gathering, a ministry within the mentally challenged community, must advocate for the community we serve.  Richard Stimson, the Executive Director of Special Gathering, has said, “A shepherd protects his sheep.  Therefore, advocacy must be a part of pastoral care.”

What do you think is the responsibility of a specialized ministry in regard to advocacy?  Even though Sally wasn’t a member of Special Gathering, did we still have an obligation to advocate for her?  What could be done for Sally, since she didn’t want any help? 

 

This is an article which I authored that was published in the SpaceCoast Business Magazine.  It is part of a series that I call, “Learning from the Non-Profit.”

 

In 2005 when David Cooke, president and CEO of Bridges, walked into The Arc of Brevard, he recognized he would be an agent of change.  The Arc, a national organization, embodied a trusted reputation and name recognition.  While the mentally challenged (developmentally delayed) community remains a cloistered, sub-culture, parents knew The Arc sheltered workshop was a safe haven for their disabled children.  The individuals Arc served depended on the organization as a good place to work.  Even more, the business community knew Arc could service their employment needs in an assortment of ways. 

 

But time required change.  The consumers were no longer satisfied with The Arc name, an acronym standing for The Association for Retarded Citizens.  The word retarded carried luggage and hurts.  Cooke knew a name change meant breaking with the national organization, a major step. 

 

Other problems existed as well.  There were two facilities, one in Melbourne, another in Rockledge.  Bricks and mortar were a major overhead expense.  Could a growing organization continue to justify this kind of expenditure in a changing, mobile world? was the question Cooke had to answer. 

 

Additionally, state and federal cuts in funding were regular and expected.  Each time the state cut funding, they mandated more services be provided with less money.  Unfunded mandates were part of the cost of operating.  Innovative funding sources were converted into a necessity, not a luxury.

 

Yet, Cooke clasped the need to maintain a respect and honor of the past.  Stories of historical conquests and prejudice had been left uncovered and untold.  Families who suffered misunderstanding and rejection had valiantly worked with and without community cooperation to bring change.  As an agent of change, Cooke knew that successful transition only comes stabilized and balanced with the hard work of past labors.

 

Cooke knew the first obstacle which often impedes change had been breached.  He had the unwavering support of the Board of Directors.  They envisioned and desired change.  The board held a vision for a seven day a week/24 hour a day service center.

 

Methodically and slowly, he began to implement his second strategic requirement–communication.  From the first day he sat behind the president’s desk, Cooke was communicating to parents and consumers his future plan.  “If change is ever to be achieved, communication is the operative word,” Cooke emphasizes. 

 

Making more services available to more people was the goal.  Marjorie Williams, Senior Administrative Assistant, stressed, “The greatest benefit of these changes has been that we can serve more people with a variety of different services.”  Pointing to the Family Liaison Program one of Bridges’ most innovative programs, Cooke said, “We work hand in hand with families, students and the school system to provide much needed sustenance.”  The program is supervised by Terry Tomoka and Jim Gerhauser.  “This has also provided us with another funding stream, the Brevard County School Board,” Cooke said.

 

Moving the Melbourne consumers to Rockledge became a natural outgrowth of the new philosophy of meeting needs every day, all day.  “Do brick and mortar make a good center?  Or do the services we are able to provide make the center high-quality?  We believed and endeavored to communicate the answer to these questions.  We wanted to help reluctant parents to understand that their adult children would receive a better quality of service in a consolidated service center,” Cooke explained.  Of course, some families remained unconvinced and refused to budge but the families who made the shift see the wisdom of the merger.

 

Backing of the board, communication, increased and merged services made the final change easier.  When the name was changed to Bridges, all ties were broken with the national organization.  Consumers and parents were smoothly united behind this final change.  Bridges—Building Bridges to Better Lives—became the new name and a better indicator of the overarching philosophy.

 

            Yet, Cooke believes that these changes can only be fully embraced through the well-focused lenses of the past.  An employee for 25 years, Barbara Pyle, Coordinator for Transportation and Social Services, heads a project to tell the story of the past.  While adopting the vision for change, Mrs. Pyle has lived the history.  Working with parents and individuals, she holds the key to this final stage in embracing change.

 

Explicit board support, communication, innovative expansion of services, and a new vision embodied in a new name made the changes of the last three years successful.  However, Cooke believes that all could have been lost had it not been coupled with a fervent and grateful celebration of the past.

It is inevitable that conflict will come when two people live, work, play or worship together.  An extremely quotable pastor from years past, Jack Green, once said, “If two people live together, there will be conflict, unless one of the two people is dead.” 

I’ve always assumed that if there is a conflict between two people at least one of those people is angry.  That does not mean, of course, that one of the two people is sinning.  The Bible clearly says, “Be angry and sin not.”  This makes it pretty clear that you can be angry and not sin.  

I am area director of Special Gathering of Indian River, which is a ministry within the mentally challenged community. Our mission is to do classic ministry, evangelizing and discipling the people we serve.  Like every other pastor who ministers to a particular group, we deliberately tackle issues that are relevant to our members.  We talk about the sheltered workshop and having a job on the outside.  We try to deal with the issue of having to live with your parents FOREVER.  Proper behavior with your girl/boyfriend is a scorching hot topic.  Yet, I’ve never squarely faced with our members the issue of siblings–until last week.

Our sermon was on Jacob and Esau.  We are all familiar with the bitter rivalry that these men faced, even in the womb.  Both mother and father were guilty of fostering these battles, which eventually led to resentments.  This week in our sermon I explained to our members that their brothers and sisters have given up a lot for them.  Because many of them were sick as children and they always have had special needs, their siblings lives were different from others.  I urged them to say thank you to their brothers or sisters for helping them and for being kind to them.

I was surprised because one especially sensitive young woman, Michal, spoke up and said, “I don’t have to, my sister loves me.”  While I don’t often welcome interruptions during our devotion time, I was happy for this one.  As she spoke several of our members vocally agreed with her.  Obviously, I’d not made my point clearly.

“No!”  I tried to clarify.  “I’m not saying that they resent you so you need to say thank you.  I’m saying they have given up a lot for you, and for that reason you need to say thank you. Recently, the Holy Spirit spoke to my heart and said, “You are so involved with what you don’t have that you don’t appreciate what you do have.”  

It is true that our members are discriminated against almost everywhere.  But in their homes, they often receive preferential treatment.  Siblings see it.  They may even be angry but it’s been my experience that few of them sin.  They embrace their disabled partner in family life and move on, helping where they can.  Siblings deserve a big thank you for their love, understanding, and caring.

Is there someone in your life that you need to thank?  Perhaps your husband or wife who does so many little things to please you?  What about one of your members who is careful to help you each time you meet?

I just read a loving recounting of a day in the life of a family that lives with a child with a disability.  Thought you might want to read it.  The title is “Just Another Ordinary Day.”  (I stole my title from her.) The blog is written by the mother in the household.  The blog is wordsmythe

Today, I spent a good part of the day resting.  My form of rest for today was gardening.  The spring sunshine was cool and refreshing on my skin.  I get such joy from trimming and digging and pulling, sweeping, bending, raking and then finally, taking a few minutes to enjoy the fruits of my labor.

There is a great deal of satisfaction we all achieve from a job well done.  As I read the blog, I mentioned earlier,  I prayed that this mother will know the sense of accomplishing a job well-done as she looks at her son, eating potato chips or sleeping.  After reading her musing, I think she will and somehow that gives me joy. 

 

A Quarrel over Wells

Call to Worship: I am with you and will watch over you. Genesis 28:15 

Live a peace with everyone. Romans 12:18

 Have one member stand and have some people tell something nice about that person. Then remind the members that their mother told them that if they can’t say something nice about people, then don’t say anything at all. Have a member read, Romans 12:18.

I. Tell the story of the Isaac and the wells from Genesis 26:12-22.
1. The people who lived there would not let Isaac live in the place where he wanted to live. He chose not to fight. He chose to move and dig more wells.
2. His father, Abraham had taught him that it is better to leave than to fight.
3. Finally, there was a place for him and he was happy.

 

II. God blesses us and many others when we chose to not fight others.

 

 

A. Do you think Isaac was a wimp or a wise man to do what he did? Maybe we should hear the REST of the STORY before we decide:
B. There are many wells in the wilderness of Israel. And many of them were dug by Isaac because he was made to move so many times. Millions of people over the years have been blessed because Isaac chose to not fight but to move.
C. It is an important principle. God blesses us and many others when we are men and women of peace.
III. Remember Isaac‘s name meant laughter. He wanted to spread joy and laughter and peace. He would move rather than fight.
A. In our workshops, at Special Gathering and at our job sites, we have many choices that we can make. Sometimes it is hard to be there. People make us angry; our feelings get hurt.  Maybe someone steals some of our stuff or gossips about us.
B. We can choose to be people of peace.

C. We can walk away from fights and arguments. Who knows what the end will be. We could save someone‘s life, like Isaac‘s wells have done.

Conclusion–God will bless us when we become people of peace. I believe one of the reasons God has bless America is because we have not usually been an aggressor nation. I know there are dark horrible times, like what we did to the Indians and slavary.  But usually we have wanted to help others and help bring peace into the world. We haven’t always succeeded but that has been our aim. If we are to be people of peace, God will bless us.
 
 
 
 
 

 

Today, I’m finishing up The Special Gathering’s monthly newsletter to our members, Connecting Point.  We named it that because we wanted our members to be able to connect with God, their local Special Gathering program, the community and each other.  It also has become a tool that we use to connect Special Gathering, which is a para-church ministry, to the congregations in our area.  At Special Gathering, our mission is to evangelize and disciple people who are mentally challenged.

Connecting Point is a pretty ambitious project each month.  There are twelve 8×11 pages.  However, we do pad the issue with three pages of puzzles and a cartoon page.  The post office also helps.  The postal rate we use to send it, requires that we employ at least a 20 point font.  There is a Bible study page and story page.  For years, one of our Bible teachers has authored the continuing stories for us.  She is E. Williams.  Ms. Williams is also a parent.

Each geographic area, which generally consists of two programs, formats their own front page, back page and two calendar pages.  These pages are personalized and oriented to the needs of the local groups.  The other eight pages are generic.  

Perhaps of all the things we do, this could be the most effective, other than our chapel programs.  Our members love receiving mail each month.  They especially delight in having their articles in the newsletter, seeing their names in print and finding our mistakes. 

If you would like to be added to our mailing list.  Just comment to this article.  Our e-mail address is lhoward@specialgatherings.com  Or our snail mail address is P. O. Box 6002, Vero Beach, FL  32961. 

What is the most effective tool you use to communicate with your members?  Have you been able to use the internet effectively to reach mentally challenged persons?  If so, what tools are you using to do that?

Last week we started learning new music at The Special Gathering Vero and Melbourne choirs.   I am the director of two of the six choirs at Special Gathering.  Our choirs sing in local churches and during our chapel services.  Our purpose in traveling to other congregations is to educate the church to the spiritual needs of people who are mentally challenged.  

Trying to keep the choirs more interested in the newer music we will learn, I let them choose the new songs.  Because our members memorize the music, it takes a bit longer to teach them the words and melody.  Therefore I begin about three or four months before they will preform the songs.  This new music contains the songs we’ll be singing in the summer and fall.

During the time we were going over the new selections, Anna kept wandering away in her mind.  Lucy and Nancy were nodding off.  Only Sheila was awake and perky during the half hour that we were rehearsing the new numbers.  After we had sung the new pieces once, maybe twice, we jumped into the older music that we knew.  Immediately, Anna was centered. Lucy and Nancy woke up with smiles.  Their grins returned and they were laughing and happy to sing our old melodic friends.

My philosophy with music and pretty much every project I endeavor is to learn as much as I need so I can do the job and leave the other stuff to people who compose, fix and invent things.  That is especially true with the computer.  After all, I don’t have to have all the music memorized to lead the choir in their first rehearsal of a song and I don’t need to understand the transfer of electrical currents to turn on a light switch.  Usually, my life philosophy serves me will.  That is until I try to invade a world where I need to understand more than I know.  Like blogging.

Our executive director gave me a wonderful gift last week.  It’s a manual on blogging.  Excited and happy, I immediately started reading it.  I underlined and tried to memorize as I went along.  You see, after about a month of blogging, I realized that I know so little about the internet that I don’t even know what I don’t know.  That, of course, means that I don’t know enough about what I’m doing to know what I need to know–much less know how to do what I need to know.  If you are confused by all this, imagine how I feel.

After a few hours of reading my rich treasure book, I needed to put it down–for a few days.  This was a fatal mistake.  I picked it up again yesterday.  I’d forgotten to mark the page I was last reading but that didn’t matter to me at the time.  Because I’d underlined key passages as I went along. I was confident that I could find my way back to my place.  The only problem.  I somehow didn’t remember any thing I had read.  I needed to begin from page one.

This time through I wrote out each acronym that I came to.  Therefore, I was not only remembering what the acronym means but I’ll understand the sentence better.  (My philosophy in reading is the Lemony Snicket Theorywhich is similar to my life philosophy.  I skip the words I don’t understand and usually the context of the material will help me to understand the sentence and the words I didn’t understand. This is not true in blogging.)

Jesus said that we should never begin a blog unless we understand enough about the internet so we can estimate the amount of time it will take us to complete each daily article and draw traffic to our web entry.  Of course, I’m paraphrasing but you get the point.  I’m not a quitter but I sure wish I could sleep through the learning process, like my choir. 

As I venture into a fresh project, I find I have much in common with my mentally challenged members.  It’s easy for me to lose interest in the new things as they become more complicated.  But that is childish, not child-like.  Struggle helps us to learn and survive.  Forcing, Nancy and Lucy to stay awake while we’re doing the hard work of rehearsal is beneficial.  Rereading those first four chapters will embed them into my brain. 

Have you found that your members are sometimes enthused to start a new project only to become totally disinterested when it’s a bit harder than they anticipated?  Have you found, like me, that you are sometimes enthused to start a new project only to become totally disinterested when it’s a bit harder than you anticipated?   Is it possible that we are more like our members, than we are different?

 

 

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