Autism Support for All Now
Autism Support for All Now
The Issue
The Honorable Ron DeSantis
Governor of Florida
The Capitol
400 S. Monroe Street
Tallahassee, FL 32399-0001
May 15, 2022
Dear Governor DeSantis:
On behalf of the many members of the South Florida autism population, we would like to inform you about the real and increasing needs of our community. According to the CDC, 1 in 44 children born in the United States have been diagnosed with autism spectrum disorder. In Florida, a concerning 4.88% of the population or 329,131 adult residents, are currently diagnosed with autism spectrum disorder and are living under the care of their family. Many of these families are burdened with providing 24 hour care and supervision to their autistic family members.
For the past twenty-four (24) years, we have been advocating for autism awareness and have provided monetary and voluntary support to all the major autism organizations in South Florida. We believe this awareness campaign has been very effective and it is now time to change the focus from “Autism Awareness” to “Autism Support for All Now”.
We, who write to you today, are a large group of parents with children, teens and adults that live with autism and reside in the beautiful municipalities of the Town of Miami Lakes, City of Hialeah, City of Hialeah Gardens, City of Miami and many other surrounding communities. We seek your leadership to focus on real solutions that will help provide our families and children the dignity and respect they all deserve. State funds should be used to meet the needs of not only the children, but the adults as well. At this time, we ask you to please consider the following requests:
1. Crisis intervention centers should be created in our major cities with a psychiatrist or nurse practitioner on staff who specializes in autism management. For your information, the only hospital-based clinic in South Florida for adults with autism only offers to see patients on Fridays and when a parent calls with an emergency, the next available appointment is October 2022. Imagine a family having their loved one in crisis and running from one hospital to another searching for services and not receiving the support or help needed. That is the most profound feeling of abandonment and despair a parent can feel and many of us have experienced it several times.
2. All hospitals should have a “quiet room” in their emergency room site where people with autism could be placed until they receive the services needed. People with autism are very visual and sensitive and most emergency rooms are noisy and crowded and can trigger challenging behaviors for a patient with autism. After a few minutes of waiting in a typical emergency room, our loved one with autism will be worse that when he/she arrived at the hospital. In addition, they stay hours and hours waiting to be admitted and in many cases waiting for 24 hours or more to be seen by a psychiatrist because most of the hospitals don’t have a psychiatrist on staff. They have a psychiatrist that runs his/her private practice and at the end of the day or early in the morning before going to his/her office, they will pass by very quickly to see the admitted patients. USA is the best country in the entire world, we are the defenders of human rights, we should do better!
3. Many of the existing autism programs benefit children with autism and exclude the growing adult (over 21) population. We should focus on prioritizing the needs of the community and allocate the funds to confront those needs. Children with autism grow to be adults with autism. Each autism organization should have a network of direct providers available for the families. That network should be inclusive for all ages of people affected by autism. The list should have psychiatrists, general physicians, specialists, etc., all specialized and trained to treat patients with autism. There is no real network of service providers.
4. The mental health care of patients with autism is in a critical state. It is almost impossible to get access to a psychiatrist who wants to work with and knows how to treat adults with autism. We need the government to create incentive programs or maybe a tax break to motivate good psychiatrics to learn how to treat adults on the spectrum. Our young adults with autism and many kids too have just been medicated with multiple drugs all at the same time creating in many cases more problems than solutions.
5. After more than 24 years of creating autism awareness, many of our children are still on the Medicaid Waiver waiting list and parents continue to be denied Medicaid services. This creates a financial burden on families already struggling with an autism diagnosis. Early intervention is crucial, and most insurance companies do not cover all the necessary therapies, taking away from those families the opportunities and the benefits of early intervention. It is crucial that more funds are allocated to Medicaid Waiver in order to reduce the waiting list, in some cases over 10 years.
6. The Behavior Analyst Certification Board has established strict requirements for BCBA (Board Certified Behavior Analyst). In contrast, the Registered Behavior Technician’s requirements are much less. Currently, anyone with a high school diploma and a 40 hour on-line training course can become an RBT. The lack of knowledge and experience could create more issues that solutions. Increasing the requirements for the Behavior Technicians who do most of the work with the patients would improve the efficiency and overall results of the therapy.
7. Every public or private school receiving funds from the State of Florida, or the Federal Government, should have an effective autism unit with highly trained personnel ready to support the students in need, instead of calling parents to pick up their children at the first meltdown, which reinforces the unwanted behaviors. This is something that happens very frequently in our school system and is a violation of the state and federal law that requires that each student, regardless of their abilities or disabilities, has access to proper and equal education and spends a certain number of hours at school.
As parents of children, teenagers and adults on the autism spectrum who have experienced the anguish of this condition, we are confident that you as our Florida Governor will support our autism community. We believe that together, we can provide our children with the support, services and programs they need and deserve.
Sincerely,
Parents, Guardians, Family and Friends from the autism community in South Florida
3,747
The Issue
The Honorable Ron DeSantis
Governor of Florida
The Capitol
400 S. Monroe Street
Tallahassee, FL 32399-0001
May 15, 2022
Dear Governor DeSantis:
On behalf of the many members of the South Florida autism population, we would like to inform you about the real and increasing needs of our community. According to the CDC, 1 in 44 children born in the United States have been diagnosed with autism spectrum disorder. In Florida, a concerning 4.88% of the population or 329,131 adult residents, are currently diagnosed with autism spectrum disorder and are living under the care of their family. Many of these families are burdened with providing 24 hour care and supervision to their autistic family members.
For the past twenty-four (24) years, we have been advocating for autism awareness and have provided monetary and voluntary support to all the major autism organizations in South Florida. We believe this awareness campaign has been very effective and it is now time to change the focus from “Autism Awareness” to “Autism Support for All Now”.
We, who write to you today, are a large group of parents with children, teens and adults that live with autism and reside in the beautiful municipalities of the Town of Miami Lakes, City of Hialeah, City of Hialeah Gardens, City of Miami and many other surrounding communities. We seek your leadership to focus on real solutions that will help provide our families and children the dignity and respect they all deserve. State funds should be used to meet the needs of not only the children, but the adults as well. At this time, we ask you to please consider the following requests:
1. Crisis intervention centers should be created in our major cities with a psychiatrist or nurse practitioner on staff who specializes in autism management. For your information, the only hospital-based clinic in South Florida for adults with autism only offers to see patients on Fridays and when a parent calls with an emergency, the next available appointment is October 2022. Imagine a family having their loved one in crisis and running from one hospital to another searching for services and not receiving the support or help needed. That is the most profound feeling of abandonment and despair a parent can feel and many of us have experienced it several times.
2. All hospitals should have a “quiet room” in their emergency room site where people with autism could be placed until they receive the services needed. People with autism are very visual and sensitive and most emergency rooms are noisy and crowded and can trigger challenging behaviors for a patient with autism. After a few minutes of waiting in a typical emergency room, our loved one with autism will be worse that when he/she arrived at the hospital. In addition, they stay hours and hours waiting to be admitted and in many cases waiting for 24 hours or more to be seen by a psychiatrist because most of the hospitals don’t have a psychiatrist on staff. They have a psychiatrist that runs his/her private practice and at the end of the day or early in the morning before going to his/her office, they will pass by very quickly to see the admitted patients. USA is the best country in the entire world, we are the defenders of human rights, we should do better!
3. Many of the existing autism programs benefit children with autism and exclude the growing adult (over 21) population. We should focus on prioritizing the needs of the community and allocate the funds to confront those needs. Children with autism grow to be adults with autism. Each autism organization should have a network of direct providers available for the families. That network should be inclusive for all ages of people affected by autism. The list should have psychiatrists, general physicians, specialists, etc., all specialized and trained to treat patients with autism. There is no real network of service providers.
4. The mental health care of patients with autism is in a critical state. It is almost impossible to get access to a psychiatrist who wants to work with and knows how to treat adults with autism. We need the government to create incentive programs or maybe a tax break to motivate good psychiatrics to learn how to treat adults on the spectrum. Our young adults with autism and many kids too have just been medicated with multiple drugs all at the same time creating in many cases more problems than solutions.
5. After more than 24 years of creating autism awareness, many of our children are still on the Medicaid Waiver waiting list and parents continue to be denied Medicaid services. This creates a financial burden on families already struggling with an autism diagnosis. Early intervention is crucial, and most insurance companies do not cover all the necessary therapies, taking away from those families the opportunities and the benefits of early intervention. It is crucial that more funds are allocated to Medicaid Waiver in order to reduce the waiting list, in some cases over 10 years.
6. The Behavior Analyst Certification Board has established strict requirements for BCBA (Board Certified Behavior Analyst). In contrast, the Registered Behavior Technician’s requirements are much less. Currently, anyone with a high school diploma and a 40 hour on-line training course can become an RBT. The lack of knowledge and experience could create more issues that solutions. Increasing the requirements for the Behavior Technicians who do most of the work with the patients would improve the efficiency and overall results of the therapy.
7. Every public or private school receiving funds from the State of Florida, or the Federal Government, should have an effective autism unit with highly trained personnel ready to support the students in need, instead of calling parents to pick up their children at the first meltdown, which reinforces the unwanted behaviors. This is something that happens very frequently in our school system and is a violation of the state and federal law that requires that each student, regardless of their abilities or disabilities, has access to proper and equal education and spends a certain number of hours at school.
As parents of children, teenagers and adults on the autism spectrum who have experienced the anguish of this condition, we are confident that you as our Florida Governor will support our autism community. We believe that together, we can provide our children with the support, services and programs they need and deserve.
Sincerely,
Parents, Guardians, Family and Friends from the autism community in South Florida
3,747
Supporter Voices
Petition created on May 15, 2022