March 2008

Making a connection with our members is important to those of us who minister within the mentally challenged community through The Special Gathering Chapel Programs.  Each week, in our sermons and teaching, we look for ways to connect intellectually, emotionally and spiritually to the the hurts and joys that invade our community.

Resurrection Day has always been my favorite day of the year.  As a child, it was because my parents let us eat all the chocolate we wanted.  Later, as I became an adult, it was because I had an excuse to eat all the chocolate I wanted. 

Aside from the chocolate binge, being a Christian, I’ve seen God move in thousands of lives and all of these miracles come to a wonderful climax each Resurrection Day.  Several things happened that made yesterday miraculous to me.

First, as I drove away from my house, along the ocean, the sunrise service was almost finished.  Usually, we can hear the singing waifing from the ocean as the congregates sing, “Christ the Lord is risen today.”  A glorious sound.  But a solitary man caught my eye.  He was on the second story porch of a bar located on the ocean.  He was on a bar stool with a cigarette in one hand, leaning far over the railing, listening intently to the sermon.  I was struck once again with the universal appeal of the gospel.

Then, when I got to First United Methodist Church of Melbourne where The Special Gathering meets on Sunday mornings, I rearranged the chairs differently.  Such a small thing, I put the chairs in a circle, instead of rows.  Everyone who entered was immediately excited about the difference in the arrangement.  “We’re going to have a great day!” they said, commenting on the arrangement.  I was reminded that the slightest things done for our members is always noticed and greatly appreciated. 

Later, as I preached the sermon, our members smiled and cried, remembering the great sacrifice of our King.  Though it wasn’t part of the sermon, at the end, I included something I had learned from Adrian Rogers’ sermon that morning.  I said, “You know how helpless we all feel at times, don’t we?  We aren’t able to keep up with others.  We can’t ever seem to do the job correctly the first time.  Too often we feel helpless.”  Now the expressions on each face became deadly serious as it always does when I’ve hit the frayed nerve of familiar pain.    

We had sung, “Worthy is the Lamb”  as part of our praise and worship.  Rev. Rogers had said that the word used for Lamb in this verse was a Greek word that means “a lamb that is a helpless pet.”   There is only one other place that this word is used.  It is when Jesus spoke to Peter after the resurrection and told him to “feed my lambs.”  At one point, the word Jesus used was “a lamb that is a helpless pet.” 

I reminded our members that Jesus takes special notice of those who are the lambs that are helpless.  They become his pets.  While the world takes no notice or heaps negative reaction on our heads, God through his son Jesus, takes us in his arms and cares for us like helpless pets.  Does that mean that we won’t struggle?  Of course not, but it does mean that God is watching with close and rapt attention; and he will reward and help us for our efforts and accomplishments done in His name. 

Suddenly the looks of concern on the faces of our members became smiles again.  They not only understood; they took that truth, grasping it to their breasts as their personal resurrection treasure.

Resurrection Day is the best day of the year!  Not just because of what Jesus has done for us but for what he continues to do in our hearts and live.  Praise God for the resurrection!

The Local Advocacy Council and the Statewide Advocacy Council consists of gubernatorial appointees who function as “guardians of the public trust to safeguard the health, safety, welfare and rights of the clients of those programs and services provided by the State of Florida health and human services delivery system from conditions or individuals that constitute a threat to our clients’ civil and human rights” (  

With the advent of HIPPA, the State of Florida took the stand that LAC/SAC could no longer have access to the records of clients of Children and Family Services even though LAC/SAC functions under  Section 402.164 – 167, Florida Statutes. 

For more than four years, DCF and SAC/LAC have worked to hammer out an agreement to allow SAC/LAC access to client records.  FINALLY, an agreement has been reached.  Below is the Inter-Agency Agreement.  Here are the interesting observations of a former LAC chairperson regarding the content of this agreement. 

E-mail from former LAC chairperson:

The first paragraph talks A LOT about what I read as easy terms to terminate the agreement. Contrast this to before (HIPPA) when access was a matter of Florida statue.  Some thoughts:

  • “Contract must be reviewed annually by all parties.” Wonder what that will be like after a year of REAL investigations where LAC makes someone really angry on the state side of things through a thorny investigation?  Still, could be fun for a year for those on the LAC!
  • (I’m paraphrasing because the doc was a picture and not a text file, so bear with me.) “Neither party shall unilaterally terminate the agreement over an access issue…without first trying to reconcile.” Now that sounds interesting.  MAYBE READ:  “Make them shut up (over an investigation) or we tear this agreement up, NOW.”
  • Most of the Designated Points of Contact causes me no difficulties personally.  “The (LAC) designated point of contact shall notify the SAC designated contact regarding any record access or monitoring issues.” If this means you have to go to the SAC rep, which we know is at this point in history a DCF stooge, it could be…problematic.
  • It’s not access if you have to go to the LAC designee who has to relay your records’ request to the SAC designee who has to relay your request to the DCF designee for records access.  Or even if you cut out the SAC designee,  this is not spontaneious access that prevents “cooking the books.” And that is how I read the 4th paragraph down under “Designated Point of Cotnact.”
  • “SAC/LAC will in a timely fashion notify DCF of dates/times of all meetings. ”  Why?  Will DCF try to attend closed session?
  • Nothing else is really worrisome and reads as a fair agreement, if you can get past the above bullets.





This agreement has been entered into for purposes of implementing the provisions of sections 402.164 through 402.167, Florida Statutes, 2007, and to permit disclosure of authorized client record by the Department of Children and Families (DCF) to whereby the SAC/LAC may monitor services and investigate claims in in order to safeguard the health, safety and welfare of consumers of services provided by DCF.

This Agreement shall be effective upon the date of execution by the parties, and is subject to renewal annually by formal execution of the parties, unless otherwise terminated by the parties prior to that date. Neither party shall unilaterally terminate this agreement due to an issue over access to records without first attempting to resolve the issue through the dispute resolution process contained in this agreement.

By entering into this agreement, DCF and SAC/LAC agree to the following:


The SAC executive Director, or his/her designee, shall serve as the administrative point of contact for any issues involving this Agreement.

Within 30 days of the effective date of this agreement, SAC/LAC shall designate staff within the various LAC Service Areas that will serve as point of contact for record access or monitoring issues that arise within those services areas during the course of their investigations.  The designated points of contact will notify the SAC Executive Director, or designee, regarding any record access or monitoring issues.

Within 30 days of the effective date of this agreement, DCF shall designate employees within the various DCF Circuits that will serve as points of contact for record access or monitoring issues that arise within those circuits during the course of SAC/LAC investigations.  The designated point of contact will notify the DCF administrative point(s) of contact regarding any record access or monitoring issues.

SAC/LAC will immediately inform DCF through the designated points of contact of any changes in council membership.

SAC/LAC will timely notify the designate DCF points of contact regarding the times and pace of all LAC meetings.  SAC/LAC, through the DCF designated points of contact may request DCF attendance and participation at any SAC/LAC meeting.


The parties mutually agree that DCF shall retain all ownership rights to records and data referred to in this Agreement, and that disclosure or release of such date to the SAC/LAC for purposes of complying with this Agreement shall not diminish or change such ownership rights.

The Department shall disclose and the SAC/LAC shall have access to Medicaid, personal health information, or other confidential information as is necessary for the SAC/LAC to undertake the responsibilities as set forth in Florida Statutes 402.164-402.167.

And request by SCA/LAC for records or date involving individuals who are or have been receiving services from DCF will comply with SAC/LAC procedures and will adhere to applicable state and federal laws and regulations.  When laws and regulations require the SAC/LAC to obtain a written release for access to confidential client information, DCF will assist SAC/LAC in obtaining the necessary release to the degree allowed by applicable state and federal laws and regulations.

When requesting record from DCF, SAC/LAC shall inform the Department of the following:

A.     The Nature of the complaint.

B.     The source of the complaint upon which access is based (LAC Hotline, Governor’s complaint, or SAC/LAC Committee).


SAC/LAC will receive notification of child and adult institutional abuse reports received by DCF, SAC/LAC will receive notification when DCF initially receives reports of abuse and neglect as well as timely notification of the final determinations (findings) once the investigation into the alleged abuse or neglect has been completed.

When providing the notifications to the SAC/LAC, DCF employees will use specified forms developed jointly by SAC/LAC and DCF (Attached).  In order to give sufficient information for SAC/LAC to determine whether or not to open an investigation, ALL information requested in the forms must be provided.

In order to ensure SAC/LAC continues to receive notifications of child and adult institutional abuse reports in the most timely and efficient manner, representative of SAC/LAC, as designated by the SAC Executive Director, and DCF, as designated by the Secretary of DCF, will meet both 4 months and 8 months from the effective date of this agreement, or as soon as possible thereafter, to explore possible options for improving the notification process.  Possible options to explore include, but are nto limited to, SAC/LAC receiving automatic notification from DCF’s existing child protection computer system (FSFN), as well as the possibility that specified SAC/LAC employees be given direct access to DCF’s system.


SAC/LAC shall ensure that members and staff are trained prior to nay investigation or monitoring activity.  Aspects of the training will include the following:

A.  state and federal confidentiality requirements;

B. the rights and responsibilities of DCF consumers and providers monitored by the various LAC councils;

C.  The requirements of this inter-agency agreement.

SAC/LAC shall ensure that member and staff sign the state confidentiality agreement once initial training on state and federal confidentiality requirements has been completed.

DCF shall ensure that DCF employees and providers are informed of the following:

A.   the existence of and role played by the SAC/LAC in protecting the rights of DCF consumers;

B.  the requirements of this inter-agency agreement.

At any time after the effective date of this agreement, the parties may work together on the training requirements included in this agreement.  In addition, both 4 months and 8 months from the effective date of this agreement, representatives of SAC/LAC, as designated by the SAC Executive Director, and DCF, as designated by the Secretary of DCF, shall jointly review all aspects of training required by this agreement in order to create and provide updated training for SAC/LAC members and DCF employees.  The updated training will include any new developments in confidentiality requirements, any possible improvements in the abuse and neglect notification process, and any other existing issues regarding the effective operation of this Inter-agency Agreement.


SAC/LAC shall notify the Agency of findings and recommendations within 30 days of the closing of any investigation or monitoring activity.


SAC/LAC and DCF agree to attempt to resolve any disputes concerning this agreement, its terms and provisions at the DCF circuit level.  Disputes regarding this agreement shall initially be referred to the DCF circuit point of contact, and the LAC Service Area point of contact where the dispute arises.  If the issue remains unresolved at this level, the issue will be referred to the SAC Executive Director, or his/her designee, and the designated administrative point of contact at DCF Headquarters, for discussion and attempted resolution.  If the matter remains unresolved, it shall be referred to the Health and human Services Coordinator for the Governor’s Office of Policy and Budget for resolution.

SAC/LAC and DCF agree that petitioning of a court to resolve over access to information shall only be as of last resort and only after all other possible means of resolving the dispute have been attempted.  SAC/LAC and DCF agree that any petition of the courts by SAC/LAC regarding access to information held by DCF shall require notification and an opportunity for DCF to be heard by the court.  SAC/LAC agree to copy nay petition to the courts on the DCF administrative point of contact as well as the DCF circuit point of contact where the dispute arises.  SAC/LAC and CF agree that the Circuit Court of the Second Judicial District in and for Leon County, Florida, will have exclusive jurisdiction for any litigation arising out of or relating to this agreement.

There is a move to require people with disabilities to pay for Vocational Rehabilitation services.  There is a meeting Jacksonville on Monday, March 24 to discuss and give input regarding this move.  There did not seem to be much information given up to this point.  There have been two other meetings as you will see from this info that I have pulled from the VoRehab Web page.  There is also an email address that you can use to give your comments.  Please be sure to send your e-mail comments today regarding this matter.

Financial Participation Determination

Overview of Policy
The Florida Division of Vocational Rehabilitation is
developing a process to determine financial participation of individuals in the cost of their Vocational

Rehabilitation services. The individual’s level

of participation in the cost of services is based on the

individual’s plan of services, income, and includes

consideration of work-related disability expenses paid

by the individual. The Division believes that this process

is necessary to maximize the use of available resources

and to continue to serve all eligible individuals.    Based

 on input from the VR’s customers, partners,and staff,

revisions have been made to the FinancialParticipation

Determination process. The newest version dated

February 1, 2008 is available for your review and

additional input. Questions and Answers that are

designed to respond to the input we received are also

available below. VR understands the importance of having local public

meetings on this new procedure. Feel free to attend

one of these meetings or submit additional comments

to or to Marilyn Campbell at 1(800)

451-4327 by March 24, 2008.Bill Palmer, Director
   Division of Vocational Rehabilitation

Financial Participation Determination Process(Word) (Revised February 1, 2008)
Questions and Answers Regarding Policy (Word) (Revised February 26, 2008)

Public Meeting Dates and Locations
Public Meetings will be held:

March 5, 2008
10AM – 12PM
Willie Webb, Sr. Park & Community Center
3601 NW 21st Street
Lauderdale Lakes, FL 33311

March 18, 2008
1PM – 3PM
Pensacola Junior College
1000 College Blvd, Room 250
Pensacola, FL

March 24, 2008
1PM – 3PM
Regency Library
9900 Regency Square Blvd
Jacksonville, FL 32225

On this Good Friday, it’s great to smell the roses.  Our Christian life is often like a large waiting game.  It’s hard sometimes to remember that Sunday will come.

About 10 years ago, after years of neglect, I began working on my garden.  I started by cleaning out one flower bed.  Then I planted some spring flowers.  It seemed that I would never be able to get the entire yard looking decent and I have a VERY small yard.  However, over the years, I kept at it.  Now it’s good to hear people talk about my garden.  “It’s like a Garden of Eden,” one visitor exaggerated, but I was thrilled.  All my hard work was finally paying off.  I could smell the roses.

Sometimes advocacy within the disability community seems equally futile.  You work for years.  You write and demonstrate and communicate with politicians and professionals and parents; and the glorious result?  Nothing.  Nothing seems to be accomplished.  Then WOW!  things begin to break. 

 This is an e-mail I received that originated from Jack Kosik of Noah’s Arc of Central Florida.  It appears that the 10 percent rule has been eliminated.  This rule enforced in Florida mandated that property could not be rented or sold to mentally challenged persons, if the population in a condo/apartment complex contained 10 per cent of people who are developmentally delayed.  We discussed this issue in the blog, “Providing a Safer Environment” on February 26. 

This is good news and reflects the good work done by advocates across the state of Florida.   Smell the roses as you read the e-mail from Kosik:



I talked with Pam Kyllonen earlier this morning and confirmed that the APD and AHCA have agreed to remove all of the density language from the Medicaid Home and Community Based Waiver Services Manual.

Pam told me that the rule amendment was on their Director’s desk for signature and would be sent to the Florida Administrative Weekly for publication.

I asked Pam whether there was any “substitute language” (the APD previously indicated that they would be developing a “new rule” restricting development of “larger congregate living developments”), she said there was no new language, but suggested that we watch the Florida Administrative Weekly for any notices by the APD on new rule development.

Lila Klausman has been relentless in this cause and has devoted endless hours to gathering the right troops…THANK YOU LILA.

We must remember that this change only happened because we came together as a unified group and everybody pitched in their expertise and shared their influential contacts. TOGETHER WE CAN MAKE IT HAPPEN!This is great news, but we now need to refocus our efforts in getting an amendment to FS 419 (the 1000′ rule). Over the next few days, we will be developing a strategy and asking you to join in on a conference call next week so we can all get on the same page and be highly focused in our efforts.We have momentum and we need to keep our eyes on the bullseye, not just the target.CONGRATULATIONS…YOU ARE AWESOME!Jack Kosik
Noah’s Ark of Central Florida
(863) 687-0804 Office
(863) 698-1159 Cell

This is a letter written by Terry R. Farmer, the President and CEO of Florida Association of Rerehabilitation Facilities, sent to The Agency for Health Care Administration regarding the proposed changes in the APD handbook.  It is the Florida ARF response to the ACHA/APD proposed rules. 


February 28, 2008 

Pam Kyllonen

Agency for Health Care Administration

Medicaid Services

2727Mahan Drive, MS 20

Tallahassee, FL  32308-5407 

RE:      59G-13.081 DD Waiver Provider Rate Table

59G-13.083 Developmental Disabilities Waiver Services Handbook

59G-13.084 DD Residential Habilitation Services in a Licensed Facility Provider Rate Table  

Dear Ms. Kyllonen, 

On behalf of the Florida Association of Rehabilitation Facilities, thank you for the opportunity to provide input into the proposed amendment of the Developmental Disabilities Waiver Services Coverage and Limitations Handbook (FAC 65G-13.800) and provider rate tables.    

Please be assured that our membership is committed to the provision of quality care and services for the individuals served.  However, community agencies cannot continue to absorb unfunded mandates such as additional training requirements, more compliance standards, and increased regulatory standards; nor can they continue to absorb rate reductions for Medicaid waiver funded services combined with increased staffing standards.    

We have reached the point where the cost of services significantly exceeds the rates the state intends to pay. For the above reasons, our position in response to the proposed rule changes regarding the residential habilitation staffing standards outlined in the DD Home and Community-Based Services Waivers Handbook (59G-13.083), the proposed rate table for Residential Habilitation Services in a Licensed Facility (59G-13.084), and the removal of the Monroe differential in the general waiver provider rate table (59G-13.081) is one of strong disagreement.   

Detailed responses regarding each of our concerns are attached. 

·         Attachment A – Residential Habilitation Staffing summary.

·         Attachment B – Waiver rates – Monroe differential for all waiver services.

·         Attachment C – Lower cost alternative proposal for Rule (59G-13.083).

·         Attachment D – Lower cost alternative proposal for Rule (59G-13.081 and 59G-13.084).  

In accordance with Chapter 120, FS, we request that the Agency adopt lower cost alternatives than the ones outlined in the referenced rules.  As you will notice in Attachments C and D, our association has developed proposed alternatives.   

Specifically, we request that the Agency make the following changes: 

(1)     Remove or significantly amend the proposed staffing standards in the DD Home and Community Based Services Waivers Handbook (59G-13.083).

(2)     Replace the rates within proposed rules 59G-13.084 with the current residential habilitation rates that are now in emergency rule and promulgate these rates as a permanent rule with an effective date of April 2008.

(3)     Reinstate the Monroe differential into rule 59G-13.081. Another concern we wish to bring to your attention is the existing requirements regarding provider qualifications. 

In the past, the handbook allowed hiring of individuals who were at least aged 18 and who possessed at least a 10th grade diploma.  Current staffing requirements do not allow for entry level employees.  Based on the low reimbursement rates that support staffing, the current standards are unrealistic and in many instances cannot be met.  We suggest new requirements reflecting the preferred hiring of individuals who are at least aged 18, have a high school diploma, and no more than one year of experience for new entry level positions.  Another option is to allow trainee status during the first year of employment.    

Before addressing detailed comments regarding the proposed handbook rule, we again offer the following recommendations for simplification of the DD system: 

·         To reduce administrative errors regarding billings, providers need access to the ABC system in order to reduce the number of errors that occur as a result of inadequate, inconsistent, or incorrect information.  Errors could be corrected before claims are filed which would prevent delays in billings and reduce the many hours of effort required to resolve billing errors.

·         Continue to reduce the number of services requiring quarter hour billings.  By converting to monthly billings, more resources can be devoted to service delivery.  Services such as Supported Employment Coaching and Adult Day Training fall within this recommendation.

·         Streamline/simplify training requirements – Where possible, allow online modules to be used for training and eliminate hourly training requirements.  Stress proficiency in required skills rather than mandating specific hours of training.   Require training renewals on a two year basis rather than annually.

·         Reduce the cost of Supported Living Coaching by reducing the time for excessive documentation and billing by:

          Reducing onerous documentation

          Eliminate monthly summary requirements in favor of the monthly notes.

          Quarterly summary requirements could remain with the fourth quarter summary being the annual summary.

          Support Coordinator plans could meet requirement for annual reviews.

·         Implement standardized assessments of service needs for all individuals and convert the needs to predictable cost models with the end goal being to eliminate frequent cost plan reviews and prior service authorizations.

·         Combine quality assurance monitoring with licensing reviews and health/safety monitoring.

·         Reduce quality assurance reviews based on deemed status for most services.

·         Allow agencies to keep client records in a centralized location to eliminate requirements for duplication. 

·         Eliminate projected service outcome data requirements. Specific comments regarding the text within the handbook follow: 

·         Page 1-2:  General Definitions:  Agency or Group Provider:  Word “file” needs to read “files.” 

·         Page 1-3:  Definitions:  Direct Service Provider:   Redefines provider to include individuals aged 18 who have face-to-face contact with recipients or have access to recipients’ living areas.   This definition is needed to clarify fingerprint screening questions from DCF.  The proposed definition uses Chapter 393, FS, text but omits reference to access to funds – was this intentional? 

·         Page 1-4:  Definitions:  Meaningful Day Activity:   Limits meaningful day activity to 30 hours per week and adds companion as one of the three types. 

Please clarify that types of meaningful day activity are approved via the Support Coordination function and that the Support Coordinator is the one who authorizes the type of activity that is billable.  Failure to include this recommendation can result in over billing of services and confusion as to who provides which type of day activity and for how many hours. 

  Providers need copies of service authorizations so they know the total amount of services clients are receiving.  A provider should not be held accountable for services delivered by other providers. 

If the amount of services an individual can receive is not understood, clients could exceed their service limits which could result in payback situations against providers who are not aware of the services being provided by other agencies.  Support Coordinators should be monitoring the total number of hours. 

·         Page 1-11:  Provider Qualifications/ Responsibilities:  DD Waiver Provider Background Screening Requirements:    Conflict exists between APD and DCF regarding the determination of which staff should be screened and fingerprinted.  This issue needs immediate resolution.  Also, clarification is needed as to what checks and/or re-checks need to be done every five years. Current policy indicates direct care staff can be in trainee status for up to 90 days awaiting receipt of background screening results and must be under visual supervision by a screened employee.  This can be very costly for one-on-one staff/recipient arrangements because the ratio becomes a two-on-one until the screening is completed.  This requirement could very well undermine the Agency’s goal to expand services such as supported living and supported employment.   The background screening process must be expedited!  Failure to comply with the screening guidelines can result in provider recoupment situations or loss of waiver agreement status, yet the process is often beyond the control of the provider and depends on DCF responsiveness. We question why Chapter 393, FS, requires more stringent screening requirements than are required in other statutes that serve other vulnerable populations such as the elderly and child care. Support Coordinators have expedited screening access.  This same procedure should be provided for agency staff along with resources to pay for the expedited screenings. 

·         Page 1-16:  Adult Day Training Requirements:  Provider Requirements:  Although not a new requirement, the two years related experience for Adult Day Training new hires is too excessive.   In essence, there is no longer an entry level into the system.  If providers are required to hire only someone with two years experience, then new individuals will never be eligible to apply because they have nowhere to get the experience.  This requirement should be no more rigid than for other service areas. 

·         Page 1-18:  Behavior Assistant Requirements:  Training Requirements:  The current handbook accepts provider training requirements.  The draft text only discusses annual training requirements.  Do provider agency training standards for training no longer apply? 

·         Page 1-32:  Special Medical Home Care Provider Requirements:  The guidelines eliminate the 1:3 staffing/resident ratio and do not reference direct care staffing.  Reference is made only to Certified Nursing Assistants, LPNs, and RNs.  Should not direct care staff be included in the ratios? 

·         Page 1-38:  Supported Living Coaching Training Requirements:  Training guidelines now reflect training via a curriculum provided by APD versus a requirement to be trained on ”A Guide to Supported Living in Florida.”  What curriculum replaces the previous module?  Can providers review the curriculum?  Unspecified documents cannot be incorporated in agency rules per Chapter 120, F.S. 

·         Page 2-5:  Requirements to Receive Services:  Medical Necessity Determinations:   The amended text replaces Medicaid Fair Hearing reference with “Administrative Hearing” references and changes the time standard for requests for hearings from 90 to 30 days.  This time standard is problematic and unfair to individuals served and their families.  Because of delays in notifications and the general lack of understanding of the appeal process, more time is needed to allow representatives adequate time to pursue the appeal process.   

·         Page 2-6:  Services and the Hierarchy of Reimbursement:  A Hierarchy of Reimbursement section indicates it is the responsibility of the waiver services provider to determine whether the same type of service offered through the waiver is also available through other funding sources, including Medicaid state plan, and billings should occur accordingly.  It is noted that provider agencies provide services and bill according to the service authorizations approved by Support Coordinators.  This requirement should reference the role of the Support Coordinator since it is not practical to expect community provider agencies to know which services and funding sources recipients have access to, especially in view of the fact that community provider agencies often do not have access to their clients’ service plans.  The Support Coordinators should be responsible for determining whether the service is offered or available by another means. 

·         Page 2-8:  APD Approved Assessment:  A section has been added on assessments and indicates the process is designed to provide a rational basis for the allocation of waiver funds to an individual with developmental disabilities.   We offer that assessments need to identify the client’s needs and they should be funded appropriately.  Cost plans should be approached separately and after the assessment process has occurred. 

·         Page 2-9:  Cost Plans:  This section indicates amendments can occur only if a documented significant change occurs in the recipient’s condition or circumstances that affect health or welfare, to avoid institutionalization, or when changes will result in a more cost effective and less restrictive plan.  Changes are to be for considerable magnitude or effect.  More clarification or examples are requested that demonstrate instances of considerable magnitude.  Also, we recommend adding time standards that indicate when decisions will be made once requests for change are submitted to APD and the capability for emergency responses when extreme behaviors develop. 

·         Page 2-10:  Definitions:  Family Home:   The text adds a clause that the service limitation of a family home does not apply for supported living coaching when the partners or spouse are determined to be eligible service consumers of APD.   Can this same provision be extended to other recipients in emergency situations such as disasters? 

·         Page 2-13: Definitions:  Recipient Nursing Assessment:  The assessment can only be done by an RN.  Because of the shortage of RN’s, providers should be able to use LPNs to meet this requirement. 

·         Page 2-18:  Adult Day Training:  Special Considerations:  In discussion regarding Adult Day Training 1-3 staffing levels, the word “and” has been added between the second and third bullets.  Does this mean a third criterion or option has been added or does it mean that the third bullet has to be met before the staffing level is approved? We recommend that the rate for this service be calculated on a daily or half-day basis, depending on the individual’s training needs, and documentation notes should only be required on a monthly basis. Adult Day Training staffing ratios for individuals being served under a behavior plan should be no lower than 1:5. 

·         Page 2-19:  Adult Day Training:  Special Considerations:  This section references using the APD approved assessment tool when requesting exceptions.  What are the exceptions?  One-on-one ratios are needed for individuals with significant self care needs (toileting, meals, medically fragile). 

·         Page 2-22:  Behavior Analysis Documentation Requirements:  Of the waiver services, Behavioral Services require the most comprehensive documentation.  Similar paperwork requirements are duplicated for Local Review Committees (LRC) and Maximus.  Documentation in Intensive Behavior and Behavior Focus Homes should be reduced to monthly summaries and the LRC approved Behavioral Individual Plan.  We recommend elimination of the justifications for service levels and program and the annual summary.  Behavioral Support should be a local decision – the LRC knows the individuals and their needs best.   

·         Page 2-26:  Companion Services:  Description:  Self-care needs have been added as a type of assistance that is allowable which suggests the definition for a meaningful day activity is “blurring” into in-home supports.  Is this the intent?

 ·         Page 2-28:  Companion Services:  Special Considerations:   The requirement that companion services do not replace a more cost-beneficial day activity such as supported employment or adult day training has been deleted.  We request that this requirement be reinstated.  We are aware of reports where companion providers are actively seeking to remove individuals from day activities and provide a more costly service that is not necessarily in the best interest of the individual served.  

·         Page 2-29:  Consumable Medical Supplies:  Limitations:  Recipients must access the state plan for this service.  If the state plan does not respond within a reasonable amount of time provision should be made that the waiver must kick-in to meet the need.  A time standard should be established for the process. 

·         Page 2-35:  Durable Medical Equipment and Supplies Limitations:  The statement has been removed that APD will respond to requests for repairs to wheelchairs within 10 working days.  This statement is no longer included on page 2-35 (wheelchair repairs); page 2-36 (Durable Medical Equipment and Supplies Limitations – ceiling lifts); and page 2-38 (Durable Medical Equipment and Supplies Limitations – generators).  The statement should be added back to the handbook.  We request addition of a statement indicating automatic approval of such requests within 30 days from the date of request if a response is not received. 

·         Page 2-46:  In-Home Supports: Description:  Please define the term “support worker.”  The definition and duties of the Supported Living Worker appear to have expanded.  Does this implement an overall hour(s) reduction in other services?  

 ·         Page 2-47:  In-Home Supports: Documentation Special Considerations: When referring to temporary assistance required for a medical condition, provision should also be made for ongoing medical conditions, especially in emergency situations.   

·         Page 2-52:  Personal Care Assistance:  Limitations:  Intense levels may request additional hours up to 300 per month (1200 quarter units) if intensive physical, medical or adaptive needs exist and hours are essential to avoid institutionalization.  We suggest that a 24 hour response time limit be added to this reference. 

·         Page 2-62:  Residential Habilitation Limitations:  References to rates for this service should reflect promulgated rates rather than “appropriate.”    The reference should be to actual promulgated rules and should not lead be vague and arbitrary. 

·         Page 2-65:  Residential Habilitation:  Minimum Staffing Requirements for Standard & Behavior Focus in a Licensed Facility:  The rates simply do not cover the staffing levels now required.  In addition to the rate reductions that are occurring as a result of the proposed facility residential habilitation rate rule 59G-13.084, the staffing standards are arbitrary and capricious and are not supported by the rates that are being paid.  Please see the attached analysis on the problems with the staffing patterns and rates.  The reference should be to actual promulgated rules and should not lead be vague and arbitrary. The reference to “other revenue sources” is unclear and as stated will result in problems when validating staffing standards during monitoring and reviews. If providers are required to hire only someone with two years experience, then new individuals will never be eligible to apply because they have nowhere to get the experience.  This requirement should be no more rigid than for other service areas. References to direct care staff hours should be amended to read:  direct care training and supervision hours. 

·         Page 2-66:  Residential Habilitation:  How were the levels of support developed?  Do they have inter-rater reliability? 

·         Page 2-81: Skilled Nursing: Limitations:  If the state plan cannot or does not meet the need, then clients should have access to waiver services.  Currently, this service is very difficult to obtain. 

·         Page 2-84:  Special Medical Home Care:  Documentation:  We request that the section that reads:  “Providers cannot bill for special medical services on the day of a home visit” be amended to specify that providers cannot bill for the service unless the recipient is away from the facility for the majority of the day. 

·         Page 2-85:  Transportation:  Documentation:  Transportation:  The Agency for Persons with Disabilities should evaluate actual costs for transportation services and move toward funding of an equitable rate. 

·         Chapter 3:  Reimbursement Information:  The guidelines allow no provisions for warnings for first time offenses.  We recommend that this provision be included in the recoupment section. 

·         Appendix A:  Core Assurances:  Required Training:  (Formerly Appendix C) requires direct service providers to participate in Zero Tolerance Training course prior to rendering services and the training is to be completed via APD web-based instruction or classroom-led instruction.  Employees must be retrained every 3 years.  Also, additional provider documentation is required.  The documentation requirements appear excessive. 

·         Former Appendix B:  The Medicaid Waiver Services Agreement has been removed as an attachment from the handbook.  It is our understanding that this agreement is a contractual agreement and should be promulgated as part of the handbook rule.   

Again, thank you for the opportunity to provide comments.  If you have questions about the above, feel free to call Suzanne Sewell at 877-4816 (#123). 


Terry R. Farmer

President & CEO 

Several years ago, my friend who is a wonderful Catholic and an elder at Special Gathering, gave me a book.  I’m not sure of the title or the author because as soon as I finished it, I lent the book to another friend and it hasn’t returned home. 

The book was written by a Quaker pastor, living in a small, upper New York State community.  While my views of many things were radically different from his, I have no doubts that this pastor is a deeply, dedicated believer.  As a Conservative, Evangelical Christian, I was fascinated by the characterization of my scriptural and traditional viewpoints as seen through the eyes of this liberal pastor. 

While everything was crouched in delightfully, loving humor, I was stung more than once to see how others view a presentation of truths with which I am quite comfortable.  It was as though a light had been beamed on my attitudes and beliefs that exposed dimensions which were unattractive and downright ugly. 

As a result, I looked with fascination at the controversy stirring and the snippets of the sermons of Rev. Jeremiah Wright, Obama’s pastor.  As a conservative, I’ve hated when the media or either political party has torn apart things which have been said in the context of my belief system.  And I find that I’m equally uncomfortable with what is happening with Pastor Wright.

I remember there was a fire storm about 20 or 30 years ago when Christian TV personality, Pat Robertson prayed to keep a hurricane from the shores of Virginia.  When the storm moved, it went up the coast, gathered strength and destroyed much of the New England coastline.  Horrible accusations were hurled at Robertson for selfishly thinking only of his region of the country and being totally uncaring about the areas which were hit by the storm. 

Now, it appears as the liberal political spectrum has desired to be more closely identified with the Christian moral arena, it’s their turn to be criticized.  At The Special Gathering we function within the cloistered, sub-culture of the mentally challenged community.  Because of the successful civil rights battles fought by African-American pastors,  we have been affected by Afro-Centric Theology.

 Without pointing fingers at anyone else, I cannot help but wonder:

How much of what I’ve written and said in regard to the discrimination foisted upon mentally challenged persons could be viewed as hateful, anti-social rhetoric?

How loving am I in presenting my viewpoints regarding the hurts leveled against the population I serve?

Is the current uproar another indication of how important it is to guard with our very lives the truths of the scriptures?  Is making the truths of scripture real to our particular sub-culture ever an excuse for not being true to the text?

When we are enveloped into a cloistered sub-culture such as the mentally challenged community, how often does group-think cause us to go places that do not make sense to other people?

How different do things that are said within our own sub-culture sound when heard by people not familiar with that sub-culture?

When we travel with The Special Gathering Choir which is composed of people who are mentally challenged, our custom is to bring someone to help in case there is a seizure.  While the primary diagnosis for most of our members is mental retardation, many of them also have seizures.  Our procedure is simple.  When a seizure begins,  we allow the person to fall and for the seizure to take its usual course.  If the seizure goes for more than three minutes, we call 911. 

It was in the middle of summer and, of course, the temperature was hot in sub-tropical Central Florida.  We had been invited to sing after a luncheon for a large group of “seasoned citizens.”  Just before his solo, Doug started to seizure.  Because he suffers from grand mall seizures, I always put him on the floor away from tables or furniture that could harm him in the event that he had a seizure.  My helper came up immediately to time the duration of the episode. 

The choir continued to sing.  

As soon as the seizure was over, Doug returned to his place in the choir.  None of the choir members diverted their gaze from me.  With great discipline, they kept the beat and didn’t lose the words.  If you knew them well, you could detect that their smiles turned to grins as Doug eased himself stage left into the front row.

Then Richard fainted.  He was in the back row on the stage, three steps up.  He went down as though he were moving in slow motion.  My vigilant helper saw him as he went down.  Quietly, he moved from his front row seat, to the back of the stage.  The choir kept their rhythm as they continued to sing.

The men who are standing beside Richard moved over slightly to give him room on the floor.

But they continued to sing, “Make me a servant, humble and meek…” 

Quietly, my helper lifted Richard up and escorted him to the end of the stage.  Because Richard doesn’t seizure but had all the classic symptoms of a heart attack, an ambulance was called. 

Finally, we finished our 45 minute concert.  By that time, the EMT’s had come and they were taking Richard to the hospital.  My helper was with the ambulance driver as they loaded Richard on to the back of the vehicle.  Doug had fully recovered.  We were moving off the stage when Joanne seizured.  Calmly, one choir member grabbed her arm.  Another choir member slipped a chair underneath her and they gently helped Joanne sit in a chair, as I closed in prayer.   Doug looked at his watch to time the seizure.  Within 30 to 45 seconds, she had recovered and we were able to leave the community center.

At times, we jokingly say, “We do seizures.”  But we all know that our members who are in the midst of a seizure are pivoting between life and death.  Even though we understand the deadly seriousness of the events, we can’t help but see the humor of the situation in those nervous, relief hours after the crisis has passed.  We do sit back and laugh at ourselves and the events.  The faces of the audience usually go from shock, to fear, and finally admiration for the discipline shown by the choir members. 

I’ve noticed that our members seem to understand life and death better than most “normal” people.  These are issue that we live with each day.  I had to announce during our chapel services today that John is critically ill and would probably die soon.  All of us have known for three years that John’s cancer is terminal.  Several of our members cried.  Many came forward to ask our deacons (who are their peers) to pray for John.   It was a quiet, holy time.  But when we spoke to John’s faith and our assurance that he would see Jesus soon,  the tears were mingled with smiles.  Chrissy giggled and there were more smiles.

In the cloistered, sub-culture where I live, seizures do complicate our lives but they also make us realize that life is a precious gift from God.  Perhaps it even lets us appreciate the gift of life more than “normal” folks. 

Have there be events in your ministry in which you have seen the Lord move through your members in a crisis time?  When have you reacted in inappropriate ways?

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