My godfather's son, Adam, was born with disabilities. His parents have lovingly cared for him at home throughout his life. However, as they age and face their own health challenges - including painful neuropathy for Adam's mother - they are increasingly unable to provide the level of care that Adam requires.

To ensure a safe and nurturing environment for Adam when they can no longer care for him, my godfather helped establish a special group home for individuals with similar needs. Unfortunately, an existing rule threatens the quality of life not just for Adam but hundreds of other special needs children and adults in Florida. Adam is being restricted from entering this group home due to Rule 65G-7. 

Rule 65G-7 by the Agency for Persons with Disabilities (APD) states that caregivers or Medication Assistance Providers (MAPs) in community group homes cannot administer insulin shots. This forces many residents into nursing homes where their quality of life significantly deteriorates.

However, it is entirely feasible to train these caregivers to safely administer insulin injections. By doing so, we can ensure that individuals like Adam continue to receive personalized care within a familiar community setting rather than being uprooted into impersonal nursing homes.

We urge the State of FL, to reconsider Rule 65G-7 and allow trained caregivers in group homes across Florida to administer insulin shots. This simple change could drastically improve the lives of hundreds if not thousands of special needs children and adults across the state.

Numerical Points for Modifying or Changing Rule 65G-7:

1) According to the Agency for Persons with Disabilities (APD) of Florida, they are mandated by law to adhere to the Waiver Support Coordination and Rule # 65G-7, which applies to administrating medications.

2) 65G-7 States “Insulin shots cannot be given by Medication Assistance Providers (MAPs) or care givers. Insulin injections can only be administated by skilled, residential or private duty Registered Nurses (RN). This includes all insulin injections including the very simple and easy to use epi-pen.

3) Ironically however, the rule states anyone can give an insulin shot with an epi-pen without validation in an emergency. I understand from this, even a plumber, janitor or anyone can administer the injection during this emergency.

4) As a result of this ruling, no special needs diabetic child or individual can move into a group home if they are on insulin shots, and are unable to
administer the injection themselves. Many of these special needs individuals do not have the understanding or capacity to give the injection themselves. However, care givers who have the understanding, capacity and training, could provide the injections if they were allowed to.

5) Yet parents, family members and friends in a private home setting can provide the insulin injection without any training, understanding or certification. No problem! I myself, as a seventy three (73) year old parent of a special needs son had only five (5) minutes of training before I was totally responsible to give my son his daily shot.

6) However, Rule 65G-7 forces special needs diabetic children or individuals to be removed from a residential group home setting, which provides support, personal attention and a home environment, and places them into a nursing home, which is almost always a cold, indifferent and hostile setting, usually resulting in a early death for its occupants.

7) The consequences of this action deprives a family the opportunity to place their diabetic child in a safe environment, such as a group home, and forces them to continue to care for their child, even after twenty, thirty or forty years. It also deprives their child of his / her fundamental civil rights. The situation is even more exasperated if the family care givers are in failing health.

8) What makes the rule so illogical and outdated, is that Rule 65G-7 was modified in 2019 to allow the care givers in group homes to tube feed special needs residents if required.

9) Tube feeding is much more complicated and medically intensive then a insulin shot with a pen. Years ago, insulin shots were given with syringes, long needles and vials of insulin. It required placing the needle in the insulin vial and drawing the correct amount needed. This required much more skill then is required with the pen. The insulin pen is about the size of a ball point pen, with a needle smaller than some of the tips of the ball point pens. It has a dial at the end of the pen, which you turn to the dose setting you want, and you press the button to deliver the dose. The setup takes about three minutes and the injection takes about five seconds. It is
extremely easy.

10) A group home care giver with training could easily perform the injection, and it is a far better alternative than sending the special needs child or individual into a nursing home.

11) Agency for Persons with Disabilities (APD) of Florida states that special needs children or individuals with disabilities may stay in a group home if
there is nursing on permanent or temporary staff. However, it is almost impossible to find any medicaid provider or private nursing agency that would supply a nurse on a regular schedule. For example, within one hundred miles of Vero Beach, only one provider was found. This provider refused to provide services stating that the $31.00 hourly rate offered on the waiver program was too little, and wanted $60.00 per hour,equal to the private pay rate. In addition, every nursing agency contacted stated that even if they could come, they could not guarantee long term service, or maintain a critical time schedule.

12) In June of 2001, President George W. Bush issued Executive Order 13217. This order states that there should be “community - based alternatives for individuals with disabilities”. It also mentions that agencies, such as the Social Security Administration, “needs to review and focus on identifying affected populations, improving the flow of information about supports in the community, and removing barriers that impede opportunities for community placement”.

13) In July of 2013, the Justice Department announced that it had filed a lawsuit against the state of Florida “alleging the state is in violation of the Americans with Disabilities Act (ADA) in its administration of its service system for children with significant medical needs, resulting in nearly 200 children with disabilities being unnecessarily segregated in nursing facilities when they could be served in their family homes or other community – based settings”. It states children with significant medical
needs in the community are at serious risk of institutionalization in nursing
facilities.

14) In July of 2023, the U.S. District Court for the Southern District of Florida ruled that “the State of Florida violates the rights of children with complex medical needs by keeping some children unnecessarily institutionalized in nursing facilities, while placing other children at serious risk of unnecessary institutionalization”.

15) The Miami Herald published an Editorial Opinion July 2023, the day after the U.S. District Court for the Southern District of Florida published its findings and decision. It read, “Why does Florida warehouse disabled kids in nursing homes? For all the wrong reasons”. They go on to say “ no disabled child should grow up in a nursing home, that should be obvious, but in florida it's not”. About 140 of these medically fragile children, do in fact, live in nursing homes. Another 1800 are at risk of the same fate. That same week, the Orlando Sentinel published a similar article.

SOLUTION:

As technology continues to improve, it becomes necessary at times to change or modify laws. This is the case with rule # 65G-7. In the past insulin shots were given using syringes or long needles and a insulin vial. The injection was measured by drawing and measuring the insulin from the vial, and giving the shot. That has all changed today. In many cases the insulin injection can be given by just turing the dial on the epi-pen to the correct dosage. That's it!! The entire process, including the preperation takes less than three minutes five seconds. To save hundreds of special needs children and individual from being forced into a nursing
home, which destroys their quality of life forever, care givers at community group homes can be trained to provide the insulin injection. A safety measure could also be put into place where a second trained individual verifies the correct dosage of insulin that shows on the dial of the pen. Both sign a form verifying the correct dosage was administered. Already Rule # 65G-7 was modified a few years back when the rule allowed care givers in group homes to provide tube feeding to residents who required assistance. That process is far more dangerous that a epi-pen insulin shot. The time is now to protect special needs children and individuals with diabeties from being incarcerated in a nursing home or other
institution!

 

PLEASE sign and SHARE this petition if you believe everyone deserves access to compassionate care within their communities!!!