February 2008


 Here is a copy of the bill introduced by Florida State Senator Evelyn Lynn from Volusia.

Florida Senate – 2008 SB 2278

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1 A bill to be entitled

2 An act relating to government organization; amending s.

3 20.197, F.S.; transferring the Agency for Persons with

4 Disabilities from the Department of Children and Family

5 Services to the Agency for Health Care Administration;

providing an effective date. 67

Be It Enacted by the Legislature of the State of Florida: 89

10 Section 1. Section 20.197, Florida Statutes, is amended to

11 read:

12 20.197 Agency for Persons with Disabilities.–There is

13 created the Agency for Persons with Disabilities, housed within

14 the Agency for Health Care Administration Department of Children

15 and Family Services for administrative purposes only. The agency

16 shall be a separate budget entity not subject to control,

17 supervision, or direction by the Agency for Health Care

18 Administration Department of Children and Family Services in any

19 manner, including, but not limited to, personnel, purchasing,

20 transactions involving real or personal property, and budgetary

21 matters.

22 (1) The director of the agency shall be the agency head for

23 all purposes and shall be appointed by the Governor, subject to

24 confirmation by the Senate, and shall serve at the pleasure of

25 the Governor. The director shall administer the affairs of the

26 agency and may, within available resources, employ assistants,

27 professional staff, and other employees as necessary to discharge

28 the powers and duties of the agency.

29 (2) The agency shall include a Division of Budget and

By Senator Lynn

Florida Senate – 2008 SB 2278

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30 Planning and a Division of Operations. In addition, and in

31 accordance with s. 20.04, the director of the agency may

32 recommend establishing additional divisions, bureaus, sections,

33 and subsections of the agency in order to promote efficient and

34 effective operation of the agency.

35 (3) The agency is responsible for providing all services

36 provided to persons with developmental disabilities under chapter

37 393, including the operation of all state institutional programs

38 and the programmatic management of Medicaid waivers established

39 to provide services to persons with developmental disabilities.

40 (4) The agency shall engage in such other administrative

41 activities as are deemed necessary to effectively and efficiently

42 address the needs of the agency’s clients.

43 (5) The agency shall enter into an interagency agreement

44 that delineates the responsibilities of the Agency for Health

45 Care Administration for the following:

46 (a) The terms and execution of contracts with Medicaid

47 providers for the provision of services provided through

48 Medicaid, including federally approved waiver programs.

49 (b) The billing, payment, and reconciliation of claims for

50 Medicaid services reimbursed by the agency.

51 (c) The implementation of utilization management measures,

52 including the prior authorization of services plans and the

53 streamlining and consolidation of waiver services, to ensure the

54 cost-effective provision of needed Medicaid services and to

55 maximize the number of persons with access to such services.

56 (d) A system of approving each client’s plan of care to

57 ensure that the services on the plan of care are those that

58 without which the client would require the services of an

Florida Senate – 2008 SB 2278

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59 intermediate care facility for the developmentally disabled.

60 Section 2. This act shall take effect July 1, 2008.

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This is an interesting e-mail exchange that I’ve had with the Executive Director of Special Gathering:

From:  R Stimson

I received a call today that said that Senator Evelyn Lynn (from Volusia) is to introduce a bill to move APD (Agency for Persons with Disabilities) into AHCA (Agency for Health Care Administration).

(Note to reader from LGHoward:  In my years when I was working in Volusia, Senator Evelyn Lynn (R-District 7) is concerned and sympathetic in regard to persons with disabilities.  Her office was always open to us and for us when there were issues that concerned the disability community.) 

FROM:  Linda G. Howard     Any chance of that passing?

FROM:  ROS    Yes.  In fact, I think it is likely to pass.

FROM:  LGH    Is this good or bad?  I personally think it would be better because APD hasn’t seemed to work out very well but I really don’t know what I’m talking about.

FROM: ROS     Don’t feel bad.  I don’t think anyone knows if they like the idea or not.

If you would like to read the complete statement of agency organization andoperations, go to http://www.fdhc.state.fl.us/Inside_AHCA/docs/org_statement.pdf

 Here is some information about AHCA from their website:

AGENCY FOR HEALTH CARE ADMINISTRATION

STATEMENT OF AGENCY ORGANIZATION AND OPERATION

GENERAL DESCRIPTION

The Agency for Health Care Administration was brought into existence by Chapter 20, Florida Statutes. It is the chief health policy and planning entity for the state. The Agency is responsible for health facility licensure, inspection, and regulatory enforcement; investigation of consumer complaints related to health care facilities and managed care plans; the implementation of the certificate of need program; the operation of the Florida Center for Health Information and Policy Analysis; the administration of the Medicaid program; the administration of the contracts with the Florida Healthy Kids Corporation; the certification of health maintenance organizations and prepaid health clinics as set forth in part III of Chapter 641; and any other duties prescribed by statute or agreement.

AGENCY HEAD

The head of the Agency for Health Care Administration is the Secretary, who is appointed by the Governor, subject to confirmation by the Senate. The Secretary serves at the pleasure of and reports to the Governor.

ORGANIZATIONAL STRUCTURE

The Agency for Health Care Administration is divided into various units and sub-units as follows:

Chief of Staff Office

The Chief of Staff office coordinates Medicaid and health care regulation policy with other state agencies, the Legislature and the federal government. This office oversees the Agency’s Division of Administrative Services, the Florida Center for Health Information and Policy Analysis and the Florida Washington Office.

Debbie Simon’s parents came to Florida from California.  They had immigrated to the US from Jamaica in the 1940’s.  Proud people, the Simon’s were hard working, upper-middle class business owners.  Debbie is a woman in her late forties who was born with developmental disabilities.  However, like her parents, she is amazingly competent. 

When Debbie’s father died, everyone assumed that Debbie would be all right because it was well known that the family had put aside finances to take care of her.  What they didn’t realize was that a younger sister had been taking from the family large chunks and pieces of their financial security.  The Simon’s could not be rational about giving to this daughter because there were grandchildren involved.  They could not allow their grandchildren to live in poverty.

Mrs. Simon had been casual friends with Debbie’s social worker for years.  After her husband’s death, she and the social worker became close friends.  Mrs. Simon was in poor health.  Cancer was slowly eating away at her body.  It appeared that she only had a few years to live. 

Even though the Simon’s had always been overly protective of Debbie when Mr. Simon died, Debbie’s mother was left in an uncomfortable position.  She could not take care of herself anymore, much less Debbie.  The oldest daughter in the family pleaded with her mother to come back to California and live with her.  Debbie didn’t want to leave Florida. 

Mrs. Simon felt torn, how could she leave Debbie?  Yet what was worst, leaving Florida or putting Debbie in the position of having to take care of her mother as her body slowly deteriorated?

Her friend, the social worker, convinced Mrs. Simon that if she left Debbie, the State would be able to take good care of her precious daughter.  To this grieving widow, it seemed like the only loving and practical thing to do.  She could not bear to rip her daughter from her friends, church and job.  However, Mrs. Simon knew that she was dying.

The day came that Mrs. Simon closed the condo and kissed Debbie good-bye.  Debbie had moved into an apartment.  She could keep her job, her friends and her church, the social worker had assumed both of the women.  Mrs. Simon was comforted that her dear friend, the social worker, would oversee Debbie’s well-fare.

However, the rest of the story is not as happy as Mrs. Simon had hoped.  Within a month, things began to fall apart.  Debbie had been moved 20 miles from the restaurant where she was a hostess.  After a month, her transportation funding was exhausted.  Debbie would have to quit her job. 

The apartment was in a small town. There were no stores, restaurants or movie theatres near by.  Debbie was stuck at home night after night.  Her once active social life came to screaming stop. 

Debbie became depressed.  After all, in less than three months, she had lost her father and mother.  She had lost her job and most of her friends because they also lived 20 miles away.  She was a middle aged woman who had lived with her parents all her life.  Now her life seemed to be spinning like an out-of-control Ferris wheel.  She felt as though part of herself had been ripped away and she stood exposed to the grief.  And she was grieving all alone.

When Hurricane Frances hit Central Florida, Debbie got a phone call from her supported living coach.  She was told to go into her bathroom, lock the door and wait out the hurricane.  She was reminded to take some cans goods and can opener into the bathroom so she would be able to eat.  Obviously, her coach forgot that her can opener was electric.  Her supported living coach could not be reached for three or four days because she was going to North Carolina taking her family to safety.  Debbie would have to survive the hurricane alone.

Terrified, Debbie called her pastor, Richard Stimson of Special Gathering.  He had received several other phone calls from other independent living members who had been left to brave the storm without any supports.  He went to work and found a place where they could evacuate.  Quickly, he and his wife, Nancy, moved to find a van, pick up the men and women, and leave town.

I have changed the names and some of the circumstances but I assure you that this story is true.  And I could tell you many more.  There was Mary Jane who was moved into an apartment at 21.  She was raped repeatedly by the maintenance man. 

Margarita accidentally poured boiling hot water on her chest late Friday afternoon.  When she called for help, she could not reach anyone on the phone.  Finally, she was told by an answering service that she would have to wait until Monday at 9AM when her staff came into work.  When she came to Special Gathering, she was taken to the hospital emergency room.  She had severe burns that were quickly becoming infected.

This is not a vindication against independent living coaches.  They are paid to come a few hours each month.  Usually, they go above and then above again what they are paid to do.  But the present system is not working, at its best, and broken, at its worst.

There is a great desire within our community to be independent.  Families desire this because it is a normal progression within the life cycle of an adult.  But there needs to be a middle ground, a safe place where men and women who are intellectually delayed are protected and can function within a social structure that does not leave them vulnerable, depressed and desperately lonely.

What do you think the solution would be?  Would a cloistered community help to provide this safe environment?

Within the disability community in Florida, there are problems if you live in your own apartment.  The State has decided that there should be a maximum of 10 percent of individuals who are intellectually disabled within the population of a residential complex.  If mentally challenged people exceed the 10 percent rule, then the State will not pay for in home supports, such as independent living coaches. 

Betsy Farmer has served as an ardent advocate for persons with disabilities since the birth of her son, Luke.   She has written a letter to Governor Crist, the governor of Florida.  Her letter explains why she believes this rule should be changed.  She has given me permission to share her letter with you. 

Dear Governor Crist:

You may remember me and my son, Luke.  He is 22 and has Down Syndrome.  He had his picture taken with you last April outside your office. 

I am writing you to share my concerns about the 10 percent density rule that is still included in the Administrative Code of Coverage and Limitations for Medicaid DD Waiver Services.  I know you have received a number of other e-mails that have the details about this rule so I’m going to focus on why I strongly support the option of supported communities for our loved ones with disabilities that are full of many opportunities for friendship and activities with people of “their choice.”

My son Luke is an amazing young man who has been mainstreamed his entire time in public school.  He received his black belt in Tae Kwon Do at 15.  He got his first job and driver’s permit at 17.  He has been working for over five years.

Luke very much wants to live on his own.  But right now his only options would be to live in a group home with a small number of roommates that he does not know or he could live in an apartment/condo in the community where he would not be safe.  Also, because of the 10 percent density rule he would have very few friends of his cognitive level to interact with. 

I have a number of friends who have chosen that option for their loved ones with disabilities and the isolation has caused them to become very depressed.  It is essential that our loved ones have the option to live with their friends and have a fulfilling social life. 

Just like the retirees choose to live together because they have like interests, our sons and daughters with disabilities have a right to that same life style.

I have a dream of one day building a condo here in Brevard that would be similar to an assisted living facility (100 units, 240 tenants with and without disabilities).  This type of setting would keep our loved ones safe yet give them an opportunity to have a fulfilling independent life and the opportunity to make choices of whom they will interact with.

This would also provide “natural supports” so that the state would not have to “pay people” to be friends with our sons and daughters.  Safety is a major concern.   This type of setting would address that and allow for the much desired independence.  I’ll keep you in the loop as that dream becomes a reality.

The problem is that under the current state regulations the “condo” is not an acceptable option.  That needs to change!

If people are allowed to live in supported communities, it will make it possible to cut the services of some Agency for Persons with Disabilities (APD) clients because of the “natural supports” and the sharing of support staff. 

That will make it possible to give services to more people who are on the waiting list.  It is time that this section of the code be removed and the manner in which services are delivered be re-evaluated.  I would be happy to serve on a committee to address this issue.

Thank you for your leadership,

Betsy Farmer aka “Luke’s Mom”
Executive Director
Brevard Business Leadership Network
P.O. Box 100024
Palm Bay, FL 32910-0024
Tapping into Brevard’s Emerging Workforce
Cell – 321-536-7062
Fax – 321-733-8931
www.Brevardbln.org
Does Mrs. Farmer have an answer to this proplexing problem?  What do you think would be the solution to the present practice of putting mentally challenged persons into bad sections of town with little or no protection? 

For several reasons, I hated when our children got their driver’s license.  Of course, there was the problem of safety. Now the crazy teenage idiots driving wildly through our neighborhood were my children.  But the other reason was that I learned so much about my offsprings when I was taking them to and from school or driving them and their friends to church.

When they were young, I learned to keep my mouth shut and listen when I was taking them and their friends to appointments.  It was as though they forgot I was in the car and they talked freely about any number of interesting things.  When they became teenagers, this was the one time that they would openly talk with me within hearing distance.

 Transporting our members is part of what we do at The Special Gathering.  Most of our members who are mentally challenged do not drive.  Therefore, operating van routes is normal operation for ministries who work with individuals who are intellectually disabled.  I actually love transporting our folk because as it was with my children, there is a breaking down of barriers that happens when you are required to be in the close confines of a vehicle with a group of people.

This morning as I picked up the members of our choir, I was excited.  The official NFL Super Bowl Blog site had picked up one of the blogs I had written and they were recommending it.  The words, “excellent blog”  left a thrilling, acidic taste in my throat.  After two of our sports fans got on the van, I told them about the blog being recommended by the NFL blog site.  They barely blinked. 

Later in our journey, I remembered the missions conference I had attended at Riverside Church in Sebastian on Friday night.  Reinhard Bonnke, the world-renowned evangelist, had been the guest speaker.  We had sat back to back at different tables during the conference meal.  After he spoke and returned to his seat, I was able to thank him, shake his hand and introduce myself. 

After picking everyone up, I got a phone call.  When we had concluded our business, I told my caller about the NFL Blog site.  Looking through the rear view mirror, I saw one of passengers, Steve, yawn.  Then I told my caller about meeting Rev. Bonnke.  Steve sat up.  He was suddenly listening, interested and excited.  As I hung up the phone, he asked,   “You met Reinhard Bonnke?”  There was an undeniable tone of astonished admiration in his voice.  “I can’t believe that YOU met Reinhard Bonnke!” 

“You know who Reinhard Bonnke is?” I asked.

“Of course, I know who he is.”  There was a tone of disappointed unbelief in Steve’s voice.  How could I consider him ignorant of who this godly man is.  “He is the evangelist who has lead millions of people to Jesus in Africa.”

As stirred as I was with the events of the weekend, I was much more amazed with Steve.  Once again, my members had shown me what is important and valid in this life.  A few NFL fans reading the blog is interesting but meeting the man of God is astounding. 

What have your learned about your members as you have transported them?  Better yet, what have they learned about you?  And the best, what great life lesson have you learned from them during your time in the van?

At The Special Gathering, we often say that we don’t pay people to minister but we pay them to supervise.  For the sake of safety during our weekly programs, we divide our members into three categories.  The first group are the members who have been designated by the professional community as fully independent and our elders (our volunteers).  The fully independent people live in their own apartments with an independent living coach.  They have no supervision during their work hours or during the hours they are in their own apartments. 

The second group are the semi-independent individuals.  These are people who work in the community and, therefore, have no supervision during most of the day.  They may live at home with their parents or in a group home.  But during the daytime, they do not have supervision.

The third group are people who are in a supervised workshop setting during the day and they live at home with a relative or in a group home.  They have constant supervision.

For our independent people, we check them in and check them out.  Some of these folks are married.  They may drive their own cars.  They come and go as they please during Special Gathering. 

The semi independent and the people designated by the professional community as needing oversight are treated somewhat differently in regard to supervision.   For the sake of safety, we make four checks of these members each time a program meets.  As we move, the person supervising verifies that everyone is in place.  We check people when they arrive; we check them before worship begins, to insure that they are in place.  We visually check as the small groups begin, and we check people when they leave.

It has been the common wisdom that when a program reaches about 30 people in attendance, there needs to be one person who is in charge of supervision and does nothing else.  In Melbourne, we pushed the limits and did not get a supervisor until we were running 55 to 60 people each week.  We could do this for two reasons.  First, Melbourne was filled with 10 wonderfully competent volunteers, who were also professionals in the field.  Second, because of budget restraints, we felt we had no choice.

In 2003, we received a grant and we were able to hire a supervisor.  She worked our Melbourne and Vero programs.  Quickly this new member of our team learned that working within this cloistered, sub-culture, there are dichotomies that constantly pull at our staff.

Our members are adults.  They must be treated with the respect afforded to all adults.  Yet, sometimes their reasoning abilities are immature.  Often, their intellectual disabilities override their capacity to make reasonable decisions.

Several years ago, Lars, an avid sports fan, came to church the Sunday of the Super Bowl.  He brought the Sunday newspaper with him.  After worship, he became agitated.  He had lost his newspaper and he could not be consoled.  Several of our volunteers worked with him as he paced and muttered.  They tried to explain that he really didn’t need the paper. 

After about a half hour, they called me over.  I half-heartedly tried to find the paper and then I attempted to cajole him back into a good humor.  Nothing worked.  He became more and more irritated.

Finally, I asked, “Lars, why do you need this newspaper?”

Frustrated, he slammed his fist on the table.  “You know,”  he said, deeply hurt by my insensitivity.

“No, I don’t know. Tell me.”

“If I don’t find the newspaper, the Super Bowl teams won’t be able to play.  There will be no Super Bowl today.”

Now I understood his pain and frustration.  In his world, the loss of the newspaper that told about the game meant that the game could not play.  We got serious about finding the missing paper.  He and I searched the rooms where we had been.  Later, we searched the bus that he had ridden on the way to church.

As I got increasingly serious about the missing newspaper, Lars began to settle down.  Knowing that I understood his concern and did not discount the newspaper dilemma helped him to regain his calm.  After searching the bus, Lars looked at me and patted my hand.  “It’s okay,” he said, consoling me.  “Even if we don’t find the paper, they might be able to play the game.”

Had I not had a supervisor who was responsible for the safety of everyone, it would’ve been impossible for me to take the time to understand Lars’ concern.  That day could have been a disaster for Lars and our program.  However, having another person there to make sure that the 99 were safely taken care of made it possible for me to avert pending trouble.

Have there been time that you have felt that you needed another person to take care of the details so you could minister to a distressed member.  Would have handled Lars differently?

I am often surprised by the ability of the members of Special Gathering to “turn lemons into lemonade.” The other day I had a conversation with one of our SpG members. When he was 18 years old, this young man was in an automobile accident which left his body torn apart.  He is confined to a wheelchair, unable to walk or use his hands.  His continual spastic movements are awkward and tiring.  Yet, his attitude is whole and even holy.

As I drove the member to our Vero program, he bragged about what a wonderful and happy life he had and how much God had blessed him.  Had I not seen the radiant smile on his face, I would have thought that he was being sarcastic or playing a cruelty joke on himself.  However, one look at the joy and delight flowing from his eyes told me that this was a man grateful for life.  He is delighted to have a relationship with His God.

Often, as hard as life becomes for people within the mentally challenged community, there seems to be a thread of joy that weaves its way into the broken lives.  At times, it seems trite to say, “Christ makes a difference in our lives.” Yet, when you see the love of Jesus flowing into hurting people and then experience the love of Christ flowing from their lives, there is a thankful appreciation for what the love of God can do in our lives.

I received an e-mail from a young missionary from China today.  She just returned back from her home in Arkansas.  (Yes, Arkansas produces things other than presidential candidates and chickens.) 

I’d like to share part of her e-mail with you.

I got off the plane craving those little flat sweet bread things that a man and lady sell on the corner of the street outside my apartment building.  I looked for the big metal barrel that they use to cook the bread, but didn’t see it for the first two days that I was here.  Then after school yesterday, I spotted it.

Sure enough, there they were with the big ball of dough, seasoning, and the big barrel with the fire that they stick the flattened dough inside.  By inside, I really mean “to the side”…to the side of the inside.  I wish I could mail them home, but they wouldn’t be warm and some of the yumminess is in the coldness in which you receive them.  Coldness being the weather, not the service.  Not at all.  The people are so sweet and have huge smiles.

But yesterday, I noticed something different.  The man’s hands are so red and almost swollen.  He spends his whole life rolling dough to make “wu mai,” five mao or the equivalent of six cents in US dollars for one little bread.  His hands are red because this is his livelihood.  He stands out in the cold and then sticks his hands inside the very hot barrel to take the bread out. 

And so, my thought is this…What makes me so blessed that I have what I have?  I really can’t explain how seeing hard-working men like this man messes me up.  Seriously, it’s not justice.  I don’t work that hard and I don’t have to worry about having the things I need. 

I am warm and well fed.  I have clothes for my body and shoes for my feet.  I hope that my life is a picture of gratefulness and more than that I hope I never take what I have for granted.  “Lord, let me not get so wrapped up in comparing with those who have more than me that I forget how rich I really am.  Forgive me when I thank so backwards.  Help me to notice those around me and teach me how to love and give.”

How perfectly this explains how I feel each day because I have been honored to know a group of people who experience deep gratitude because of their deep needs and wounds.

Is there someone you know who has touched your life because of their generous and grateful spirit in the middle of deep needs?

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