Caregivers


Dear Friend,
 
This year The Family Cafe is excited to offer a number of bonus
training opportunities on the days prior to and following The 12th
Annual Family Cafe.
 
The first of these is “Community Leadership and System Change,” which
will be held on Thursday, June 17. This session is ideal for anyone
working in a leadership position within an organization, community or
advocacy group. It will be lead by Gary De Carolis, President of the
Center for Community Leadership and author of A View from the
Balcony: Leadership Challenges in Systems of Care. Gary will provide
a lively, interactive day of cooperative learning that explores
valuable leadership concepts that can be applied in all kinds of
settings. This all-day session will equip you with the tools you need
to lead and succeed!
 
To register, please visit http://familycafe.net/leadership2010/
<javascript:void(0);/*1265730300731*/>
. (This is not the general Family Cafe registration link.) The cost
of the all-day seminar is $100, and it will be held at the same site
as The Annual Family Cafe, the Disney Coronado Springs Resort. Hotel
reservations can be made by calling 407/939-1020. Remember to mention
The Family Cafe to ensure that you receive the reduced room rate of
$113 per night.
This is a great opportunity to gain some essential skills. Please
take advantage today! 
Yours
The Family Cafe

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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