FLORIDA DEVELOPMENTAL DISABILITIES COUNCIL, INC.

Dr. Susan Gold, Chairperson
Debra Dowds, Executive Director

To: PIP Graduates

From: Debbie Hannifan, Partners in Policymaking Project
Coordinator

Re: Partners in Policymaking Program
The Florida Developmental Disabilities Council, Inc. is currently accepting
applications for the Partners in Policymaking Program Class of 2010. Please
take a few minutes to review the attached information and application and
forward to those whom you work with within the developmental disability
community. Space is limited and the application deadline is April 1, 2010.
Please note that this is a free program only available to those with
developmental disabilities and parents or guardians of young children with
developmental disabilities.
If you have any questions, please feel free to contact me at
Dhannifan@tampabay.rr.com or call me at (863) 738-6367.
Debbie Hannifan
Partners in Policymaking Coordinator
Florida Developmental Disabilities Council, Inc.
Dhannifan@tampabay.rr.com
P.O. Box 2864
Lakeland, Florida 33806
phone (863) 738-6367
fax (863) 688-2551

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

 

 

Talking Points on Tiers

 

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

Proposed Specific Criteria for Waivers

Tier 1 Waiver (Currently the Developmental Disabilities Waiver)

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

 

 

 

Modified April 24, 2008

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

 

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

THE FULL TEXT OF THE PROPOSED RULE IS:

65G-4.0021 Tier Waivers.

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

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

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

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

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

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

(a) Adult Day Training;

(b) Behavior Analysis;

(c) Behavior Assistance;

(d) Consumable Medical Supplies;

(e) Durable Medical Equipment;

(f) Environmental Accessibility Adaptations;

(g) In-Home Support Service;

(h) Personal Emergency Response System;

(i) Respite Care;

(j) Support Coordination;

(k) Supported Employment;

(l) Supported Living Coaching; and

(m) Transportation.

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

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

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

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

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

 

65G-4.0022 Tier One Waiver.

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

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

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

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

(a) Intensive behavioral residential habilitation services;

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

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

(d) Special medical home care.

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

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

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

 

65G-4.0023 Tier Two Waiver.

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

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

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

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

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

 

65G-4.0024 Tier Three Waiver.

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

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

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

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

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

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

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

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

(i) Occupational Therapy; or

(ii) Physical Therapy; or

(iii) Speech Therapy; or

(iv) Respiratory Therapy.

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

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

 

65G-4.0025 Tier Four Waiver.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Through Spinal Cord Resource Network, an organization formed by the George Family, Laura George has become an ardent advocate for hurricane awareness.  If there is an issue, regarding hurricanes that you wish to address you can go to her website and respond.  She will also be speaking on this issue.  You can obtain her speaking schedule at the website address below.

From SpinalCordResourceNetwork:

The latest is (after a call to Chip Wilson, Florida Disability Coordinator,  from a friend of mine…) that he now wants to meet with us -supposedly next week.  If there is any thing at all that you would love me to tell him on your behalf…take advantage!  Please!  Obviously I’m meeting with him regarding sheltering…so you may want to cater it slightly to that. 

The other update..is that we are hearing strongly…that again…the governor will have no time for us this year.  Big surprise. 

However, I will be attending and speaking somewhat at both the Miami and Palm Beach Hurricane Conferences.  We will also be meeting with Hillary Styron, Director at the National Organization of Disabilities/Director of the Emergency Preparedness Initiative.  I am also going to try and coordinate a meeting down there between friend of mine (with an extensive background in psych issues and who currently heads the Leeza Gibbons Memory Foundation) and a few others.  Perhaps if you are looking for ideas or connections I can get something for you there as well.

All our blessings…

Laura George

I realize that I’m a bit freekie but I love crowds of people.  They are so much fun to watch.  Trying to intermingle with them makes me feel like a teenager again.  The children are refreshingly energetic, even the bratty, squalling ones.  Older people have learned to draw from the strength of others and that is encouraging to observe.

Parents come in every variety.  There is the self-absorded mother talking on the phone, while frantically searching for her six-year old in a restaurant who had escaped from her grasp.  (He had gotten tired of waiting for her, and he had snuggled into one of the booths for a quick nap.) On the other end of the parent sprectum, we observe the overly-attentive mom who sanitizes every surface her preciously primmed three-year-old reaches out to touch.

Of course, traveling with seven to eight mentally challenged adults completely changes the dynamics.  On Wednesday, I went with our South Carolina area director as she escorted seven of her members through Universal Studios Theme Park.  Because I wasn’t responsible for the safety of these folks, I was free to enjoy them and the people who pressed around us.  Mostly the crowds were courteous and polite, regarding the occasional missteps of our members. 

However, there was more then one person who seemed to think that mental retardation was contagious.  Yet, according to every medical professional opinion, I know about, it is not.  There was the man who pulled his child to his side and physically wrapped both arms around her as they walked past us.  He was mumbling in a stiff frantic whisper, “Hurry!  Hurry!  Hurry!”  I was thankful that none of our members misspoke or noticed him.

There are also the woman who was laughing and eating an ice cream cone until she saw us as we exited the park.  Her smile became a stern stare.  The chocolate chip cookie dough ice cream dripped on her fingers as her blazing, frown escorted us to the exiting gates. 

However, the most refreshing reactions were those that came predominantly from twenty-somethings.  They understood and enjoyed us as they passed.  One attractive, blonde woman, reached out to Clovis who is 80 years old and took her arm.  “Are you having a good time?”  she asked in her most pleasant voice.  “I’m so glad that you could come here today and that I got to see you.”  Clovis stopped walking in order to grin at the young lady who whipped past us.  Some others benched on the side-lines smiled and waved as we passed.  Melaine smiled broadly and waved. “Makes you feel like you’re in a parade,”  Florence said.

On my drive home, I took a few minutes to recount the day.  There was joy in almost every minute.  Melaine and Lois were sick but they never complained, even when they had embarrassing accidents.  Clovis at her advanced age had to be coaxed to rest.  Even cranky Florence was happily surprised when our SC director purchased everyone an ice cream cone. 

While our members are people with their quirks and forbles, they have the abilty to make even an awkward, embarassing moment work to their advantage.  They are able to live in the moment and enjoy it to the fullest.  It is true, mental retardation isn’t contagious.  But after spending a day relaxing and enjoying seven friends who are, I came away grateful that the grace of God can turn any disadvantage into a blessing for the world.

What are some of the reactions you have observed when you escort some of your members in a crowded situation?  Do you tend to be the overly protective mother or the self-absorbed, distracted one?

 

Shelly is a young woman in her early 30’s.  She is an avid writer.  Some of her articles appear in our monthly newsletter, Connecting Point.  Terry’s passion is kitchen duty.  Anything that involves dirty dishes or grimy pots and pans presents a welcome contest for her.  Steve is stingy to a fault but he loves unconditionally.  When his girlfriend became sick, rather than dropping her, he became even more devoted to her and her growing needs.  Larry’s girlfriend has been faithful for almost 20 year.  Larry can muster up faithfulness for about 20 minutes, if she is in the room. 

People within the mentally challenged community are sometimes lumped together as though they have one personality.  But they are individuals with individual needs and desires.

There are actually three personality types usually designated to our population.  The first is the congenial “Downs Forever Child.”  She is petite and wears an eternal smile.  Our Downs Forever Child (DFC) is compliant to a fault and loved by everyone.  She never gives anyone any trouble and is the perfect little person.

The second personality is similar to the DFC.  He is Forrest Gump (FG).  FG is tall and strong but shy and unable to effectively communicate with people but he is a sage with wisdom beyond his IQ.  He can be greatly misunderstood but things seem to happen for him that are wonderful because he is such a good, wise and kind person.  He is as gentle as a kitty cat and though people don’t understand him, in the end, everyone loves and admires him from afar.

 The third personality is the Mice Killer.  He was made famous by the book, Of Mice and Men.  MK is similar to Forrest Gump except he cannot control his emotions and therefore you never know when he might snap off the head of his pet mice or a pretty young woman he greatly admires. 

Like all stereotypes, none of them are real.  People with Downs can be cranky and stubborn.  Forrest Gump isn’t a great fountain of wisdom hidden in the body of a mentally challenged individual.  And our population is seldom involved in crime, mass murder or mayhem. 

The wonder of this population is that they are not phonies.  They don’t wear masks to hide their imperfections.  Henri Nouwen wrote about his experiences within the developmentally disabled community and in doing so, dared the church to become authentic in our relationship with the Lord.  We love to quote and read Henri Nouwen and his famous book, In the Name of Jesus.  However, there are a few people I know who dare to live the Nouwen experience.  There is a family in our community who opened a group home in their house.  As their corporation grew, young couples moved into the different group homes and became a part of the mentally challenged community 24 hours a day. 

And there are others.  We have many faithful volunteers who come and live four days out of the year within this exciting cloistered, sub-culture at our Camp/Retreat held once a year.  Usually they come from curiosity or concern.  Some teenagers come, dragged there by their parents.  But they almost always come back year after year.  They work and play and clean messes and receive abundant love.  They learn the rich variety of personalities within the mentally challenged community and they come back for more.

 Have you seen the great variety of personalities within this community?  Who are some of the most interesting people you have met?