Caregivers


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

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

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

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

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

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

What have you found that works in these hard situations?

It’s been too long.  I’ve not had a preteen/teenager living in my home for many years.  Our first child was a boy and his transition from child to pre-adult was quick and violent.  My perfect child exploded in so many ways that I was left reeling in shock, terror and despair.  Later, I learned–but didn’t realize at the time–that an explosion is the only way to venture into the unknown and horrifying land called Adulthood.

Our second explosion came in the form of a daughter.  She was different.  She exploded slowly with fireworks rather than an atom bomb.  However, a continual burst of cherry bombs and fire crackers is equally unnerving after six months or so.

I have to admit the third child exploded in so many different ways that it was almost a relief.  Marked by a passion for Christ and missions, she erupted all over the world (literally) with trips and adventures that took her from Europe to Asia.

But my last venture into this explosive mine field was more than 20 years ago.  My skills in dodging and weaving have not been sharpened in so many years, that I’m out of practice and I’ve completely lost my edge.

This week I’ve been staying with an exceptionally gifted and intelligent young woman whose parents are out of town.  Her manners have been honed by the protective virtues of parents with one child who deeply desired that she have five siblings.  With the only child, there is the tricky jig of monitoring every movement while desiring to show parental love.  Because none of us are perfect, this results in amazingly healthy ways of showing our love spotted with some unhealthy ways, as well.

This young woman thrives on debate.  I believe she came out of the womb thinking of ways to debate the weather, books, toads, God and the universal secrets of life.  Carefully, she uncovers your views by asking a miriad of questions; and then before you can know what slammed you, she takes the opposite side and destroys your position.  For a person like me who loves The Debate, it has been an exciting and exhilirating couple of days.

But I must confess that I’m lost most of the time we are together.  One moment, as comrades, we are battling the unphathanable depths of literature and drama.  Then, within moments, we’ve been thrown into a battle of wits between the two of us.  Everything in me says, “Don’t argue with her.”  I know this is wisdom.  It is  the best and only path. Nevertheless, I seem powerless to resist the pull of the surging waves that hit me.  Then once caught in the undertow, I struggle to swim along the shore to be able to get my feet back onto the ground.

In short, I’m a stranger in a strange land.  Yet, rather than depressing or disappointing me, the opposite effect emerges.  Being with a young, gifted child who is on the trembling edge of adulthood has been excilerating and wonderfully pleasant for me.  As she slammed the door, this morning yelling, “I don’t have time for all this.  I have to go,”  Closing the door, I silently prayed for her and I knew that her time with me has been much more depressing than excilerating.  But that is strange land in which she now lives and she will live here for almost a decade.  Nothing can make it better, except a deep relationship with the Lord, buckets of love and time.

It is difficult to understand how much God loves us.  While few of us will admit it, much of our lives is spent waiting for God to slam the judgment hammer into our skulls.  Working within the mentally challenged community, I’ve come to understand a bit about unconditional love.  I am area director of Special Gathering, a ministry to people whose IQ’s are lower than “normal.”  Our mission is evangelism and discipleship of the wonderful community the Lord has given to us.

Please understand.  People who are intellectually disabled are not immune to sin.  Bad behavior is as common within our community as any other gathering of human beings. Yet, there is a common strain that runs within every part of our cloistered sub-culture.  That is unconditional love.

Wendy knew that I was angry with her because she had deliberately disobeyed the rules at camp this past weekend.  We let it slip the first three or four times; but by the fifth offense, I confronted her regarding her inappropriate behavior.  My voice was stern, firm and steady when I explained that she would no longer be welcomed at camp if her behaviors continued.

Wendy’s head reaches almost to my lower chest.  She looked at me with wide eyes.  “I love you, Linda Howard.  I so sorry,” she said with her eyes welling up with tears.  “Will you forgive me?  I love you, Linda Howard.”

She grabbed me around the waist and repeated, “I love you, Linda Howard.”

Understand, her emotional outburst didn’t loosen my resolve to enforce the camp rules.  She was obviously wanting me to know that she loved me even though I had told her that she might miss coming to camp. I could not help but appreciate her unconditional love.

Once again, I was surprised by the joyful spirit Wendy extended to me.   Sure, many of our members are depressed.  Some of them are even depressing.  However, the over arching surprise package is their joy.

Learning from them has become an easy pill to swallow, especially when I am again and again surprised by joy.

 

I walked away from my conversation with John’s only remaining family, a sister and brother-in-law, wishing I had known him better when he was alive.  But that always happens when I interview a family before attempting to conduct a memorial service or funeral.

John died on a Wednesday.  He was a member of The Special Gathering, a ministry within the mentally challenged community.  An important part of our Melbourne program and a member of the choir, we were often cloistered in the van traveling with the rest of the singers.

Therefore, I probably knew him as well as anyone did, other than his family.  But I realized as I got into my car and sat for a few moments reflecting on John’s life that there was so much more to know about him.  These were important things about his past that had shaped him into the man I admired.

There were vital details that I didn’t know or understand.  John was 84 when he died.  Which means that he was about 74 when I met him.  He was a tall and thin man who always stood straight, proud and erect.  He smiled often but you had to savor his words because he didn’t often share his thoughts with anyone.

John was born and raised on the farm.  All his life, he knew hard, hard work.  Therefore, he was stronger than most men half his age.  He loved to work; but, like many people, he was hesitant to push himself into an unknown situation, concerned that he might make a mistake.

For 65 years, John was a devoted train watcher.  The trains carried coal from the mines of Pennsylvania, running directly through the middle of the farm.  Most of his life, his partner in the fields was his father.  Unwavering, the pair sweated through the heat of the day and pouring rain.   But the men would leave their plow and hoe and straighten up as soon as the rambling or whistle could be heard.  They would take off their hat, pull out a handkerchief and wipe the sweat from their face and neck.  The duo watched every train as the cars ambled or raced through the middle of their crops.

“If Mother caught them, she would scold unmercifully,” his sister reported, but her temper couldn’t keep them from stopping when the next trains rambled past.

After John severely broke his leg at the age of 65, his sister and her husband brought him to Florida.  He lived with them for the next 15 years.  He continued to work, helping with the household chores.  He went to Easter Seals at the Alzheimer’s section.  Though he had not one bit of Alzheimer’s, he delighted in helping to push the wheelchairs of the other more frail members of the troop.

While we don’t ever admit it, there is something wonderful about death, that final passage of life.  Because people stop to remember.  We brace our hoe under their armpit and take off their hats.  Slowly, we wipe our brows and listen and embrace the rambling noise of memories.  And for a brief moment in time, we allow ourselves to rejoice in the past.

Jesus said at the last supper, “Do this to remember me.”  Memory is a vital part of the Judeo-Christian heritage.  The passover is a ritual of remembering.  But somehow we refuse to do it.  Our lives are wrapped tightly in the present and future.  Even our older generations, don’t take the time to remember…or we don’t take the time to listen.

But death abruptly unwraps the cocoons of our present and our future and we come to a screeching halt as the noise of the past slaps us in the face.  The only thing John’s family, friends and I have left are our memories of him.  His quick smile.  The way he said, “I know.”  Consequently, for a few days, we’ll savor and nourish and treasure those memories.  We will remember.

What are the treasured memories you have of your members?  What member would you miss the most?  What memories are you impressing on your family and members?

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

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

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

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

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

For Sam, Cara and George, the large problem looming in their lives on Sunday was if I received their camp forms for the Memorial Day Weekend retreat that we hold each year.  This is an important four-day spiritual getaway and a vacation for our members.  They save their money all year to be able to attend the camp.   

I stood in front of our members making announcements and their minds were pulled toward camp, not the weightier issues that had monopolized the conversations of most of my friends during the week:  labor demonstrations and disputes, mounting federal debt, continuing budget short-falls in every state, the implications of wars in the Middle Eastern countries.  Honestly, it was a jarring and refreshing change.

My small world has been occupied with the declining health of my husband and the increased financial outflow that is needed for his care.  I smiled at the honest and forthright concerns that dominated their thoughts.  I remembered a story that an evangelist from Nicaragua told me about an event that happened one night when the Communist were taking over the government in Managua. 

He was visiting his mother-in-law; and he asked her about the stereo set that she had borrowed from him a few months before.  “It was surreal,” he reported.  “About the time I asked her about the stereo, a gun battle broke out in the streets of the city.  Gun shots from the insurgents began to fill her house.  We dived under the table for safety.  As we lay there with our lives hanging in the balance, my mother-in-law started arguing with me about who owned the stereo.  She insisted that I had given the equipment to her.  I was in such shock.  Bullets were flying around the house.  We were hovering under the furniture.  All she could think about was disputing the ownership of a stereo.” 

It is obvious that the mentally challenged community are not the only people who campartmentalize their lives.  I’ve not done any research on this subject but I wonder if our minds choose to process those things which affect our personal well-being before other issues are allowed to crowd our psyche.  Perhaps that is why we are constantly told from Genesis to Revelation to seek God and His will for our lives. 

The hardest disciplines in Christendom seem to be prayer and meditation.  Without a set time and ordered regimen in my life, I will never do the hard work of prayer.  Even though I cannot imagine that God Almighty wants to have a relationship with me and engage me in conversation, without a disciplined resolve, I will waltz through my day without giving prayer a second thought.

The world’s weighty problems do demand our time and energy in prayer.  Additionally, we need to train our members to look beyond their daily needs, hurts and issues,  seeking God for his perfect will to come into our world.

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

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

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

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

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

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

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

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It seems that the Florida Legislature has decided.  Again it has determined to exact the wrath of the budget cuts from the back of the most vulnerable population in our state–persons with disabilities.  Another five percent has been cut from the rehabilitation budget of the Agency for Persons with Disabilities.

While other agencies have taken a sizable hit, their required cuts are four percent.  The APD budget has been slashed by 12 percent. 

It appears that everything that can be cut has been cut from those who require the least amount of expense:  people living at home with their parents.  Yet, it isn’t clear whether  they will suffer even more with new requirements forced on rehabilitation programs. 

There is a question about whether rehab programs such as The Arc (formerly the Agency for Retarded Citizens) will be able stay afloat.  In Florida and nationwide, this premiere rehab program has taken some sizable hits by local programs which have chosen to come from under the arm of their parent organization.  Now, with these severe cuts in their funding, there is concern among parents and providers that this year could break the backs of the organization.

A few days before Christmas, my husband and I had an appointment with the intake nurse from Hospice.  We’d been told at least 75 to 100 times that Hospice would be able to help with his day-to-day care and that he would qualify.  Now, understand this information had come from Hospice nurses, counselors and chaplains who knew about our situation.  In addition, we had a referral from his doctor.

After a series of questions, the nurse said, “He doesn’t qualify.”  To verify, she called her administrator.  They reviewed our answers and the information that had come from his doctor and together they agreed that he didn’t qualify.  In reality, WE don’t qualify because most of the help would benefit me.  I thought this would be a pretty traumatic decision.  However, after they left, I’m somehow relieved. 

This takes one more concern off the table for a time.  It’s true that I won’t get the help but I’m better able to maneuver him and his wheelchair than most men twice my size and half my age.  I know it’s because I’ve worked with him for about ten years now.  While I love any help I can get, it’s sometimes painful to watch people try to a job that has become second nature to me.

Often, the parents of our members at Special Gathering talk about their lives to me and to each other.  As permanent and full-time caregivers, these men and women are people that I greatly admire.  Special Gathering is a ministry within the mentally challenged community.  Our members are cognitively delayed.  Part of our ministry is to parents because we provide a respite time within a safe environment.  Our goal is evangelism and discipleship.

Most of the time parents are open about their short-comings.  One distressed mother said, “I’m exhausted by the seemingly endless demands.  Yet, when she is gone from me, I’m consumed with concerns and even guilt.” 

One parent-caregiver of a high-functioning  woman often tells about the time that she gave into the demands of her social worker and allowed her daughter to go spend the night with a caregiver.  The daughter fell and injured her hip.  She has been in a wheelchair ever since.  “What good did that one night do for me?” she laments.

One parent told me pointedly, “I need the help.  I don’t need the aggravation.”

For now, my husband and I will rock along on the same path we’ve been walking for years.  No help.  No aggravation.  Guess that make us even.

What are some of the things which benefit your parents?  What are some of the things which cause the greatest aggravation from supports which are provided by the state?

This is an e-mail I received from Florida Association of Support Coordinators (FASC).

 

10% Reduction Exercise

 

  • Reduction of $707,377 in General Revenue from APD headquarters operations.
  • Reduction of $733,282 in General Revenue from the area offices.
  • Reduction of $182,835 from the Developmental Services Institutions.
  • Reduction of $1,556,131 in contracted services, room and board, prescriptions, etc.
  • Reduction of $1,774,056 in services to clients.  (Those not on the waiver.)
  • Reduction of $957,409 in institutional forensic staffing.
  • Reduction of $1,724,687 in institutional staffing.
  • Reduction of $1,864,185 by combining consumable and durable equipment purchasing on the waiver by regional purchasing contracts.
  • Reduction of $4,000,000 by eliminating behavior assistance service in standard and behavior focus group homes.
  • Reduction of $3,286,586 by reduction in accounts for persons in Consumer Directed Care by 10%.
  • Reduction of $9,685,154 by consolidating services…day training, supported employment, supported living, in-home supports, companion, and respite.  This would represent an 8% reduction in current expenditures.
  • Reduction of $11,198,958 by capping Tier One to $120,000 per year.
  • Reduction of $51,455,374.  This option was not recommended as it would reduce current services such as meaningful day and in-home supports and would result in institutionalization of individuals.

 

Budget Request

 

  • Request for $2,400,000 for the transition of 60 people from Gulf Coast to community.  (Continue plans to close Gulf Coast by 6/30/2010.  Average expenditure of those transferred from Gulf Coast has been running around $79,293.00 each.  The requested funds are for six months of funding.)
  • APD requested $234,925 to support expansion of CDC+.  People transferring to CDC+ must give up 8% of their funding so this request will be offset by cuts to the Waiver program.
  • There is a request of $4,500,000 for people on the waitlist.  These would be short term or one time services such as respite. 
  • There is a budget request of $30,000,000 to serve 2,200 people.  300 of those they are requesting services for are children in the DCF child welfare system that Florida law has required priority of funding for.  Remaining funds would go to fund some in crisis on the waitlist.  (734 children/people would go into Tier 4 and 1,466 others would probably go into Tiers 3, 2 and 1.)
  • A request for $6,886,500 to offset the projected deficit in the Waiver for 2009-2010.
  • A request for $31,932 for salary and benefit from to complete transfer of positions from DCF.
  • Request for transfer of five positions from the Institutions to APD Program and Compliance budget. 
  • Request for two positions that were in the Institution budget, (but located at Central Office) to the Central Office budget.
  • Request of $138.979 to continue 3 legal positions, some of which are currently associated with Gulf Coast Center.
  • Request of $728,193 in funding for legal staff.  Some of the funds are requested as a transfer from DCF, which at times have a conflict of interest due to representation of foster children.  In the past year, APD has less than 1,000 fair hearings.  It is anticipated that Agency attorneys will represent the Agency in over 5,000 hearings in the coming year.   The Agency anticipates over 5,000 fair hearings, 55 tort actions, 34 garnishments, 7 arbitrations, 14 unemployment compensation hearings, 990 forensic cases, 184 dependency cases, 9 appeals, 59 guardianships and other proceedings.
  • Request of $729,524 ($658,603 non reoccurring funds) for core technology infrastructure. 
  • Request of $270,750 from AHCA contingent upon receiving a grant from The Department of Health for maintenance of a registry for special needs.
  • Request of $78,657 for position to perform Information Security Management.
  • Request of $184,050 for three positions in the Office of Inspector General. 

 

Notes of Interest

The anticipated split for the Waiver program is based on 55.13% federal, 44.87 percent from General Revenue funds.

 

APD and DCF have had to request a budget transfer item of approximately 3 million for supported living subsidies due to the fact that the current source of the funds cannot be used for supported living subsidies.  1,700 people receive this subsidy.  If the transfer is not approved, the result will be termination of the subsidy.

 

$13,433,384 dollars were certified forward. 

I received via e-mail an interesting letter.  It is a sample of a possible tier letter of appeal template.  The question posed by the author of the e-mail was:  Do you think this will work?  I’m not sure who the author of the sample letter is.   Every support coordinator that responded felt this was a workable letter of appeal.

You need to know that this letter was probably not written by a lawyer but an advocate.  I am not a lawyer and I don’t give legal advice.  However, if you believe this appeal letter will work, you should get the advice of your support coordinator and you are free to use it and/or pass it on.  Again, I am not a lawyer and I don’t give legal advice.  I just feel it’s important to pass on information I receive that I think may benefit you.

Date

 

                                                                                    Name of Recipient

                                                                                    Address of Recipient

                                                                                    City, Florida, Zip Code

                                                                                    Phone Number

                                                                                    Personal Representative

                                                                                    Phone of Personal Rep.

 

VIA FACSIMILE [(850) 410-0665] AND U.S. MAIL

 

Agency Clerk

Agency for Persons with Disabilities

4030 Esplanade Way, Suite 380

Tallahassee, FL  32300-0950

 

                        Re: Request for Administrative Hearing – Tier Assignment

 

Dear Agency Clerk:

 

            Please treat this letter as a request for an administrative hearing under the authority of Florida law at Sections 120.569 and 120.57, Florida Statutes, as I am adversely affected by decisions made by the Agency or its agents.  Specifically, I am contesting the actions taken by the Agency for Persons with Disabilities, including but not limited to findings of fact made by the Agency when assigning me to Tier ___ under the Agency’s Developmental Services tier waiver system.  I believe the facts show that I should have been assigned to Tier ____.

 

1.      My name and address is listed above.  I am being represented in this matter by ________________, Esq.  Her address is ____________________________; her phone number is _________________.  An authorization for her to serve on my behalf is attached.  Please serve all pleadings and other documents on her.

 

2.      As noted above, I am requesting an administrative hearing on the matter of my assignment to Tier ____ in the Agency’s waiver system.

 

3.      The following facts and circumstances lead me to believe my assignment to Tier ____ was in error, and I should have been assigned to Tier _____.  

·        For the past ____ year(s), I have received the following services

(List here) ___________________________________________
____________________________________________________
____________________________________________________

____________________________________________________

____________________________________________________

 

·        All of these services were judged medically necessary by the Agency and its agents.

·        My condition remains unchanged, or worse, and I continue to be in need of these services.

·        The total annual cost of these services was $__________________.

·        By comparison, my assignment to Tier _____ means that I will have a limit of $__________ on the medically necessary services provided to me.  This limit will require that I reduce or terminate services I am currently receiving.

·        The reduction or termination of services provided to me will cause my condition to worsen, potentially place me in danger to myself or those around me, and put me at risk for institutional placement.

·        The reduction or termination of services provided to me is not justified by any medical finding made by the Agency – indeed, I was not even examined by a medical professional prior to this assignment to Tier ___.

 

4.      A copy of the Agency’s tier assignment notice to me is attached.

 

5.      I received a copy of the Agency’s notice assigning me to Tier ____ on

___________, 2008.

 

            6.  A document authorizing _________________________ to represent me in

     this matter is attached.

 

            I have filed this request for a hearing on the matter of my assignment to Tier ____ within 10 days of receiving such notice.  As a result, I expect my services will continue to be provided, as required under federal law.  If this is not the case, and my services are or have been reduced or terminated, please inform my representative immediately.

 

                                                                        Sincerely,

 

 

                                                 _______________________________________

                                    Signed:  Recipient (or authorized representative for recipient)

 

           

Attachments: (2)

            Agency Notice of Assignment to Tier ____

            Authorization of Representative

 

 


THE NOTICE OF “TIER ASSIGNMENT” PROVIDED BY

 

 

 

THE AGENCY FOR PERSONS WITH DISABILITIES

 

TO:

 

 

______________________________________________

Name of recipient

 

 

 

(Do not forget to place a copy of the notice here!

. . . and throw this sheet of paper away.)

Loneliness

Of course, she won’t come or bring her two children because she ended the telephone conversation with “I’ll think about it.”  In polite language that means “No.”  And I don’t blame her.

I’d called this mother to invite her to come and bring her children to our Special Gathering that meets on Sunday morning at First United Methodist Church in Melbourne.  I liked her immediately.  The vibrancy and confidence of her personality was exposed in her voice.  She was polite and careful not to reveal the offenses she’s experienced over the years.  But I’ve worked with The Special Gathering of Indian River which is a ministry within the mentally challenged community for almost 20 years.  We do classic ministry, evangelism and discipleship. Too often I’ve heard the signs and her conversation screamed with desperate undertones of rejection. 

There are several reasons why she won’t entrust her precious treasures to The Special Gathering.  The most obvious reason is that they are her children and she isn’t convinced that I care enough about them to care enough about them.  Too many people have promised to care, only leave her and her treasures stranded in that all-too familiar corridor called Hope.  Unfortunately, in our world, Hope usually leads to an empty room labeled Loneliness.  She’s seen her children sitting quietly in Loneliness too often.  She chooses to not risk the hurt this time.

Second, they’ve been rejected by normal society once too often.  Rejection by her church was more than she could bear.  “Can you imagine how much it hurts to see everyone else included and my children left out more times than I can count.  Every single time.”  It was a retorical question.  She didn’t expect me to understand.  So there was no question mark and she didn’t wait for an answer.  But in our 20 minute conversation, she repeated her question three times.

Third, she doesn’t know me, Linda Howard, well enough to trust her must precious gems into my care.  My schedule doesn’t permit me to go to Saturday bowling anymore because I’m in Vero.  She mentioned it to me, “I don’t remember ever seeing you at Saturday bowling.”  If I really cared, wouldn’t I be at the things her children care about?  Wouldn’t I show up at least some time?  Sure, I’m busy doing a van route during that time and I’m at their workshop weekdays but she isn’t there during the week.  Where am I during the rest of the week?

Fourth, her children aren’t able to speak and she’s not confident that her children won’t be ignored, again.  “They have no behavior issues.  So they are usually shuttled into a corner and left to stare. That’s normal for them.”  She explained that she’s learned how to engage them but most people don’t even try.  While I endeavored to explain that our program is geared to minister to mentally challenged individuals, she ears and head heard but her heart was not listening.

There are probably several other reasons why she won’t come now.  But she will sometime in the future and the children will become more confident disciples of Christ.  God will work in her heart as I pray and reach out to her children.  She’ll begin to develop at trust level with The Special Gathering program because she really wants to be able to trust the Church, her church, again.

But for now, she won’t come.  And I don’t blame her.   

This letter was sent from APD (Agency for persons with Disabilities for the State of Florida) on June 3, 2008.  According to this letter, consumers and guardians will have much more say in regard to residential placement, as long as those placements have been approved by APD.  

What a great example of choice ala APD.  In fact, it seems this could be six of one and half a dozen of the other. 

Let me see if I have this correct.  APD will not tell you where you can live.  You can choose any placement for yourself or your child, as long as the place is the place that APD wants you to choose.  Hmm…Sounds like a poncey game to me.

TO:  APD Area Program Administrators, APD  Residential  Planning Coordinators, DDS Superintendents, Waiver Support Coordinators, Central Office Staff

FROM:  Mac McCoy, Deputy Director of Operations

SUBJECT:  Implementation of name change fro Area Office Residential Planning Coordinators

The Agency for Persons with Disabilities encourages consumers and/or their guardians to be actively involved in the process of choosing where and with whom they live.  Florida Statute 393.062 states, “Further, the greatest priority shall be given to the development and implementation of community-based services that will enable individuals with developmental disabilities to achieve their greatest potential for independent and productive living, enable them to live in their own homes or in residences located in their own communities, and permit them to be diverted or removed from unnecessary institutional placements.”

In keeping with the language outlined in statute above, it was recently determined that staff within the Area offices who are charged with coordinating residential referral resource will no longer be termed, “Placement Coordinators” but will now be known as “Residential Planning Coordinators.” APD fundamentally does not place the persons we serve, rather we provide residential choices in accordance with an individual’s level of need and allow for them or their guardian to make the final decision as to where they will reside.  Effective immediately, please replace the updated title on any business cards, signature blocks within email, posting on the Area office websites or any other document that refer to the former terminology.  Please forward this information to waiver support coordinators, service providers and anyone who may be affected by this change.  Thank you for your immediate attention to this matter.

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