Children with autism should not have to wait for treatment! We have found a solution but need your help!
With Autism affecting 1 in 88 children, including our own, we formed the nonprofit, Parents In Action, Inc. to give direct support to families living with autism through behavior services, respite, parent/caregiver trainings and advocacy. We are starting with a pilot program in Florida and we plan to take this nationwide!
We are creating a future where individuals and their families living with autism can get the support they need, a future where the support not only exists in every community in the USA, but is actually, really, truly available to all families and not dependent
on the size of their bank accounts. Yes, we have lofty goals! We are “autism moms” and anyone that has met us knows that we do not back down, do not give up & failure is not an option!
We have already started! We are approved providers through Florida Medicaid & Florida's Agency for Persons with Disabilities. We have also finished our first training and hired our first employees!
OUR STORY BY SHARON BOYD
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.” – Margaret Mead.
Shortly after my son Austin was diagnosed with autism spectrum disorder in 2002, I came across this quote. I copied it and placed it everywhere to remind me that anything was possible.
About this time, I met another autism mom with a son, Matthew, the same age as Austin, and a baby girl the same age as my other son, Adam. We were incredibly different; our backgrounds, our income, everything. We came together for the one thing we shared, our sons were diagnosed and we were scared and desperate.
That mother, Tammie Baker, reached out to me one day and invited my family to her house for a barbeque by the pool. We never went together anywhere as a family for fear of a meltdown or having people not understand what we were going through.
This was the first invitation we accepted. As they say the rest is history. Our families shared many happy days together, relaxed and being ourselves.
Tammie and I became the self-proclaimed “Lucy and Ethel” of the autism community. Sometimes we “bit off more than we could chew”. Sometimes we chased after loopholes, developed some hair-brained schemes, and searched for every connection we thought may help to get what our sons needed. We did everything we could think of to help the autism community. No matter how big the goal or how unlikely success may have seemed, we always prevailed, as long as we were a team.
We built successful walks with our group of friends, also in the autism community. We became a support group that happened to put on a walk, and that walk became a family reunion of sorts.
We helped in 2008 to pass Autism Insurance Legislation in Florida. We and our group of friends continued to support each other over the next few years.
By 2013 many insurance companies and Medicaid were now paying for behavior services. It was very frustrating to hear from families that they could not access the services we had all been fighting for due to a lack of providers. There was no doubt in our minds about our next step.
That was the birth of Parents in Action, Inc. We knew the time had come to step up and set an example of how we can join the existing system and mold it into something to finally help our families.
We are a small group of committed individuals. It's time. Let's change the world!
STEP 1: Behavior Assistant Program
Many insurance companies and state Medicaid are finally covering behavioral treatment for autism up to 40 hours per week in the home. This can change an individual’s prognosis from lifelong dependency on others to becoming an independent member of society. Few trained professionals exist to provide the needed treatment because of the previous lack of payment source. With the advent of insurance reform and rapidly increasing autism prevalence rates, there is a backlog of clients waiting for services.
Individuals with autism & their families have now been left with a shortage of providers, specifically Behavior Assistants to work with Board Certified Behavior Analysts. BCBAs write the behavior plans, but they are spread thin with large client bases, leaving no time for them to recruit, screen & train assistants to provide in-home support. Tragically, often there is no implementation of the behavior plans. This is where we come in with a unique training model that incorporates family dynamics with behavior training. We will create the new standard and fill the void of providers.
Step 2: Respite Program
Often parents cannot find caregivers who have the training to safely watch over a child with autism who may display unpredictable behaviors or have medical issues. We will offer trained caregivers so that parents can take a much-needed break. We know MANY couples who have not gone out for dinner or out to see a movie in over a year! The siblings of a child with autism often have their needs take a back seat to the needs of their brother or sister. Often the parent(s) cannot go to school or sporting events with the sibling. Parents should not have to choose which child gets their attention or whose needs are greater. Families need this support in order to survive.
Step 3: Advocacy Program
From the federal level all the way down to your own community. We will be a conduit for parents to find the resources they need in the community. We will teach parents how to apply and get services for their children, how to navigate through the complex system, how to advocate for their educational rights and how to effect change on a larger scale through their elected officials. Our co-founder Sharon is actively engaged in conversation with Florida's Agency for Persons With Disabilities as they update their strategic plan and consider input from providers and community.
Step 4: Safety Program
CPR training will be provided at no cost for friends & families. Our children are much more likely to need emergency assistance than typical children. Unfortunately, drowning and choking are common causes of death. Our co-founder Tammie Baker has become an American Heart Association trainer to be able to provide these trainings. ALL of our employees will be trained in CPR and First Aid. We will also assist families in connecting with other safety resources in their community such as Project Lifesaver.
With your help, we plan to have 30 behavior Assistants trained and placed in homes on a full-time basis by the end of 2013. We will contract with Board Certified Behavior Analysts to write ABA plans for our clients and oversee them while we recruit, screen and train the Behavior Assistants to be used for implementing the support plans.
When the goal of $30,000 is met, we will be able to hire, train & place 30 full-time behavior assistants in homes across SW Florida, impacting 30-60 children with autism and their families. Yes, it is expensive to train them to our standards! Our initial clients will have coverage through Medicaid or private insurance. We will bill Medicaid or insurance for these Behavior Assistant services. Because we are nonprofit, the revenue from billing will be used to train and place more Behavior Assistants in homes. This creates a cycle that will enable us to grow exponentially with the goal of offering services to families without means to pay.
When we meet our tipping point of $10,000, we can get started with 10 behavior assistants. With 10 behavior assistants, it will take longer to generate revenue than it will with 30. We need to at least meet this tipping point of $10,000 to have a strong start towards building the momenum needed to make services available to all families who need it and to implement our Respite, Advocacy & Safety Programs.
If you'd like to learn more, please contact us here.