Advocacy, Florida

Florida Passes a bill into law!   In 2005, HB 17 was passed into law for Children that have Familial Dysautonomia.  In 2006, HB 1247 was also passed into law adding Adults with Familial Dysautonomia.
 
We owe so much to Representative Dick Kravitz of Jacksonville and to Senator Nan Rich of Sunrise, Florida for helping us.  A very special recognition also goes to our dear friend Larry Gonzalez, a Lobbyist in Tallahassee that gave voluntarily of his time and energy for many years. 
 
Thank you, we could never have done this without you!  
               

         Familial Dysautonomia Home and Community-BasedServices
        Waiver Services Description 

Support Coordination -- Support Coordinators assist participants by advocating, identifying, developing, coordinating, and assessing supports and services by assisting the participants and their families to access supports and services. The Support Coordinator is responsible for working with the participant and/or the participant's parent(s) or guardian to develop the support plan.

Respite Services -- Respite is a service that provides supportive care and supervision to a participant when the primary caregiver is unable to perform these duties due to a planned brief absence, an emergency absence, or when the caregiver is available but temporarily unable to physically care for or supervise the participant. Respite care may be provided in the participant's own home or family home.

Non-Residential Support Services (NRSS) -- Non-residential support services (NRSS) are individualized training activities provided to an adult or child in integrated, non-residential settings. This training provides access to community-based activities that cannot be provided by unpaid supports and are activities that result in increased access to community resources without paid supports. These training activities are age-appropriate and geared to enhancing acceptable behaviors in a participant's environment.

Consumable Medical Supplies -- Consumable medical supplies are those non-durable supplies and items that assist participants in performing activities of daily living. Consumable medical supplies are of limited use and must be replaced on a frequent basis. Supplies covered must meet all of the following conditions: a) be related to a participant's specific medical cond ition, b) not be provided by any other program, c) be the most cost-beneficial means of meeting the participant's need, and d) not be primarily for the convenience of the participant, caregiver, or family. Consumable medical supplies are limited by the participant's support plan. Supplies covered include Ensure or other food supplements when determined necessary by a licensed dietitian and feeding tubes and supplies not covered by Medicaid State Plan that are prescribed by a physician.

Durable Medical Equipment -- Durable medical equipment includes specified equipment required by the participant. Durable medical equipment generally meets all of the following requirements: a) can withstand repeated use; b) is primarily used to serve a medical purpose; c) is generally not useful to a participant in the absence of a disability; and d) is appropriate for use in the home.

Behavioral Services -- Behavioral services are provided to assist a participant in learning new behavior, in increasing existing behavior, reducing existing behavior, and emitting behavior under precise environmental conditions. Behavior analysis includes the design, implementation, and evaluation of a plan for modifying the environment to produce social improvement and understanding of the participant's behavior.

Dental Services - Dental services are provided to strengthen the Medicaid State Plan dental services. Dental services are limited to four additional dental cleanings each year for children and up to four c1eanings per year for adults.

All waiver services are limited by level of care, must be authorized as medically necessary, and are limited to an annual total amount of $20,900.00.

August 2006

FD HCBSW contact at AHCA
Our Contact at AHCA, for the Familial Dysautonomia Home and community based services Waiver as of 2/27/08:

Kelly Hensley
Medical/ Health Care Program Analyst
Agency for Health Care Administration
Bureau of Medicaid Services
2727 Mahan Drive, Mail Stop 20
Tallahassee, Florida 32308
Phone: (850) 921-4464 
hensleyk@ahca.myflorida.com

 
How did we obtain the FD Home and Community Based Services Waiver in Florida?
All Families Interested in obtaining a Familial Dysautonomia Home and Community Based Services Waiver in your State and/or those that need Cera Lyte, vitamins, eye drops, ointments and any other Non-Rx items added to exiting Medical Waivers and/or Medicaid.  

A short overview of the process we went through.
First, contact a local Legislator in your area, a local Senator or House Representative.   Ask them for help.  

Tell them what you need, don't be shy.  If you need additional things added to your already existing waiver, maybe it can be done.  Ask.
**What you are seeking is more information about "Katie Becket" and/or Deeming waivers.  Each state will understand these items.  Ask how your State handles Developmentally Disabled and/or Medically Fragile Children and Adults needs?   This information will be much more helpful in the long term.  Children and Adults are handled differently, so pay attention how your State handles these things. 

For Children: 
Chava had a great idea and as it turns out its a Federal Program, but its only for kids 21 and under.  Ask you Legislator about getting what you need for your child added to your exiting waiver and ask about this program.  It won't be a long term solution, but it may be a interim one. 

EPSDT is very much alive and well in Florida it is just that not many people know about it or access it. There is a Medicaid handbook for EPSDT: HealtChild h Check-Up (formerly EPSDT), October 2003.  Not many folks appear to understand this either.

Here it is in Florida.  Each state will have one, its Federal.  Ask your Legislator.  This may help families with children, but you still need to pursue this same type of coverage for Adults with FD, otherwise the day will come when your ADULT doesn't have access to the medically necessary things he had before to keep him healthy.

http://www.baccinc.org/medi/CD_April_2005/Provider_Handbooks/Medicaid_Coverage_and_Limitations_Handbooks/Child_Health_Check-Up_(formerly_EPSDT)_October_2003.pdf

For Adults:
Ask, if what you need can be added to your already existing waiver, if you are on one.  Or have gained access into Medicaid via Social Security.  See if what you need can be added.  Ask your legislator to look into it for you.  How do they handle Developmentally Disabled and/or Medically Fragile Adults in your state?
 

For Everyone:
Some of you may need the NDC codes for the products you use, here are some of them.  That means they are registered with First DataBank or a similar agency. Your chances of getting it covered might be greater (but not guaranteed).  You will also want to include a letter of "medical necessity" from your treating doctor for all the products your Child/Adult needs.

Cera Lyte products:  the NDC/UPC codes are different for each Cera Lyte size and each Cera Lyte flavor and each Cera Lyte sodium strength has a different number.  Look on the package you are using.

MaxiLife Rice Tocotrienols NDC: 27434-0006-57

Green Tea:  Pending, Company is working on it.

Things that are medical necessary should be covered items. Either under Medicaid/State Plan, or via a Developmental  Disabilities Medical Waiver.  In Florida we call these types of Waivers, "Home and Community Based Services Waivers".

Each person has a right to choose. Alternate or conventional medicine, or a mixture of both. Many of the childhood diseases and disorders have no cure, we can only treat symptoms and try and keep them healthy until science catches up.  PLEASE, think about your baby, growing up as an adult.  Also, be sure you don't restrict your waiver, each person uses different things.  Keep any waiver you create opened for different brands and products for the future.  Consider needs and what he/she may need as an adult.  What if he/she marries?  Can her husband's income be waived?  Yes, if its in the Developmental Disabilities Waiver.    What if my child/adult lives with me?  Will my income be waived.  Yes, if you get a Developmental Disabilities waiver for your child and adults are included.   

One of the biggest problems we have in Florida are that children's waivers did not include them growing up into adulthood. 

Right now we are in the process of changing things to look more like what they have in Michigan.  You/your legislators, may want to look at what they have done in Michigan.  Florida families may want to contact their local Family Care Council, (see Topic:  Know Your Rights) 

If you have to set up a NEW Familial Dysautonomia Home and Community Based Services Waiver:

I called over to AHCA here in Florida.  Our contact is now Kelly Hensley, she was just hired.  Pam Kyllonen was kind enough to help me in the interim,  Below is her response and waiver description.  Its on the bottom, below my message.

The Waiver itself is on my web site under "Advocacy".  www.fightdysautonomia.org   Included are the Legislators names and Bill numbers for you and your Legislators to see.

First, we educated Legislators and met with many.  Then a Bill was presented in the House and Senate.  The Bill, finally passed into law.  It took a while, ok a long while.  But, it was finally done.   This was NON-Partisan Bill. 

OUR local Legislators helped us, our friend who worked as a lobbyist in Tallahassee donated his time to help us.  We had to educate our own Legislators about FD, show them our medical info, costs, expenses.  Explain our situation.  Explain all we had been through with the kids over 8 years.  What we needed, would mean so much to us and others in Florida with FD.   After our Bill was passed into Law for children, we again had to wait and finally added adults the following year.  Be sure your Legislator budgets money in your Bill for children and for adults.   We testified and submitted our story.  We spoke and testified before many, many committees as needed and necessary.  We even brought the kids along. 

The State of Florida asked the Federal Government to add FD to Developmental Disabilities, we were approved and we obtained Federal Matching Funds for our waiver. 

Your Legislators will have to go through this process.

AHCA's Florida's brochure for FD has not yet been completed, it is being worked on.  When I get it, I will let you know asap. 

You might also want to write down your family's story and questions that you have been asked over the years, just in case you are nervous.      

This next portion is from Pam at AHCA:
Brief Waiver Description.  In one page or less, briefly describe the purpose of the waiver, including its goals, objectives, organizational structure (e.g., the roles of state, local and other entities), and service delivery methods.

This waiver will serve participants diagnosed with Familial Dysautonomia.  The services are support coordination, respite services, non-residential support services, consumable medical supplies, durable medical equipment, behavior services, and dental services.  This Waiver will be managed through the Medicaid Services Bureau of the Florida Agency for Health Care Administration.  Providers that are in good standing and currently providing services to participants of the Developmental Disabilities Home and Community-Based Services Waiver administered by the Florida Agency for Persons with Disabilities will be invited to provide services to the participants of this Waiver.  Services will be accessed at the individual’s local level in their own community or neighboring community.  Services provided under this Waiver will be monitored by the Florida Agency for Health Care Administration.  The goal of this Waiver is to delay or prevent institutionalization and allow eligible participants to live at home in their community as opposed to hospital placement.
Pamela Kyllonen
Medicaid Services Program Analyst
Agency for Health Care Administration

I hope all this is helpful.  Thank you to all that have written to me and my family.  We appreciate your kind words.  It was a lot of work, but in the end it was all worth it.  It was really nice for me to be able to do this.   I don't work, or should I say I don't get paid, but  I do work.   We have so many things out of our control in our lives with FD.  I enjoyed the experience.  I am here if you all need help.  It does all take time, so be patient.  Our Agency for Heath Care Administration (AHCA) here in Florida worked very hard and I think they were as frustrated as I was. 

It is very important for our children/adults to be able to live in their community with supports and medically necessary services.  Their is no cure for FD, and we do what we must to give them support and help them stay alive and healthy enough to survive until science catahes up to our populations needs.

Please feel free to contact me .

Additional Information, On Getting Supplies and a Provider once you get benefits added,  or an FD Waiver in your state. 

Remember:  Get those letters and/or Rx's for the medically necessary vitamins, electrolyte drink, eye drops, ointments...

Any of the Non-Rx items you use for your child/adult.

Ask your local Legislator to find out if any of the other Waivers in your State get vitamins and/or other NON-RX items.  We were told none of the Waivers in Florida allowed for NON-Rx items.     Our Legislator were the key to the sucess of our Familial Dysautnomia Home and Community Based Services Waiver.

Once we  obtained the FD Home and Community Based Services Wavier we then were told WE had to obtain providers for our own waiver.  (they meant my Support Coordinator, I suppose).  She tired many and months passed.

I can't begin to tell you how many Venders/Provider my support coordinator and I called.  Most did not want to help us because FD was a rare and small disorder.   Florida has a tremoundous amount of p/w required to become a local waiver provider and even more p/w to become an out of state provider.

If you get this far and are told SORRY, we (your state) don't have a provider for you that will be able to furnish the vitamins, Cera Lyte and other Non-Rx items you need.  You or your Support Coordinator/Case worker can always contact International Nutrition and ask them to please sign up to be a provider in your State and/or Area.  You Support Coordinator/Case Worker will need to make sure they get the proper paperwork for each STATE or AREA that will need supplies.

This takes time, and you/your support coordinator and Legislator will have to stay on top of it. 

If you are lucky you may very well find a local provider.  But, it was very difficult for us and took a long time.

It took us about a year to find International Nutrition.  We were fortunate to have found them through friends and contacts via families with  Downs Syndrome.  

Thank you to Dixie.

***Make sure to ask for at least a  3-6  month supply of what you need, if you can store it properly and safely in your home.

If you can not get a  3- 6 month supply, ask for the maximum number of supplies you can get each time.

It makes it much more worth while for the Provider and more convientant for you.  Ask your support coordinator/case working and or the Provider how much lead time they need to get your supplies again, when you run out and put it on your calendar.

Make sure you/your support coordinator follows up via a call or e-mail about timely payments to your providers.  FD is a small disorder and we want to keep all our providers.  The providers won't supply us with what we need, if they are not paid timely.

You may also want to number the last few boxes of Cera Lyte, Eye Supplies, and Vitamin Bottles...I order at about 5 bottles remaining.  Keep in mind that I go through large amounts of supplies with my three children.   We are all busy, tired and often forget.  No one wants to spend every day worrying about what our child/adult needs in the way of supplies, so think about it and work it out at the beginning of your journey.  Do what is best for you and your family.

These things can only be estimated and you should explain and write it down on any documents you sign or submit to your local agency, support coordinator/case worker.  Our children grow, amounts change as needs change.  Additional vitamins or other things may even be added as the need arises and your Childs/adults support plan will change too.  This is why we want to keep our waivers opened for any additions.

Let me know how it all works out.  I am always here if you all have questions.  Thank you Beverly for the reminder.   

All the best.
Sondra Mallow