Can someone just tell me where to start…..
Like most of you parents of children with special needs, I was constantly researching ways to help my son Brandon get the services he needs. Also, like most of you parents I ran into many stumbling blocks in getting those services due to income restrictions, asset restrictions, lack of information, lack of funding availability, not knowing the right person or even not knowing how and what to ask for on top of all the lengthy, complicated paperwork that had to be filled out in its entirety without mistake or said mistake would cost you months or even years of non-service. Totally frustrating system. Let me help you!
What does HCBS mean?
Home and Community Based Services. This is person centered care delivered in the home and community. It is designed to allow for individuals to stay in their homes instead of receiving services in a facility for care. This program is housed under Agency for Persons with Disabilities. It is considered the payer of last resort. Meaning all other means to pay for service has been exhausted.
What can it cover for my child (under 21)?
Must be diagnosed with one of the following: Intellectual Disability (Full Scale IQ of 70 or below) Severe forms of Autism, Spina Bifida cystica or myelomeningocele, Cerebral Palsy, Prader-Willi syndrome, Down syndrome, Phelan-McDermid syndrome
Must live in Florida, must be at least 3 years of age or more and have a disability that started before the age of 18. This is not based on income of the parents/guardian, but it is based on the income of the child. (There are ways to safeguard this income criteria for your child that we will talk about in another blog post)
Now you have qualification, and you get excited, but hold on they now tell you there is a 7 to 10-year waitlist. What to do next.
What is the Waitlist?
The Waitlist is exactly what is says. I list of individuals waiting for services. Due to budget issues not all people that qualify for the waiver will get services right away. This depends on if you have an emergent need. Even though they tell you it will take 10 years to get off the waitlist, apply and get on the waitlist. Periodically they will give temporary services to people on the waitlist. Also once you are on the waitlist your can apply for a crisis defined as homeless, exhibit life-threatening behaviors that place them or others in extreme danger, or have a caregiver who is in extreme duress and can no longer provide for the applicant’s health and safety. Examples of this can be a caregiver that is having difficulty transferring a child due to back problems, a child that runs out of house or away from the parents putting himself in danger, a child that is aggressive to others causing injury or a self-injurious child. My son got services due to PICA (he eats un-edible items.)
How to apply
Click on the link below and get your application
After completing the application, include proof of eligibility (i.e. medical records showing diagnoses, psychological evaluations etc.). Also, must send proof of domicile such as driver’s license, voters’ registration, homestead exemption etc.
Call 1-844-865-1172 Easter Seals for directions to send documents.
Don’t feel overwhelmed, take it one application at a time. You are a superstar!
Birth to 3
You may have already started scrolling the internet for available resources for your child that has been newly diagnosed or needs some additional assistance. It can be very confusing and overwhelming. Lets start at the beginning:
Northeastern Florida Early Steps
If you suspect your child has a delay or is newly diagnosed, you can seek help through the State of Florida’s Early Steps system. This program is at no cost to the family and is not income qualified. It is for children birth to 3 years of age. You can self-refer or get your child’s pediatrician to refer you for an evaluation. If your child was a preemie and weighs under 1200 grams at birth they automatically qualify as an established condition.
No Cost to you Developmental Evaluations
They will do a developmental evaluation to determine if your little one needs services. Here is a link to qualifications. Early Steps Qualifications Services can be speech therapy, physical therapy, occupational therapy, infant/toddler development specialist and more. Therapy is done in the natural environment, so in the home and/or daycare or community. They have playgroups so that you can meet other families and your children can have opportunities to play in an inclusive environment. To reach them to schedule an evaluation you can call 904-360-7022.
If you have insurance and want to set up private therapy apart from Early Steps there is other really great resources in town. Call you insurance company and ask for in-network providers for the therapy that you are searching for. If your child has Medicaid then there will not be any copays for therapy sessions with Medicaid.
Stay tuned to our blog for more valuable resources and services for your family.
Your child is born with special needs and you are suddenly thrown into a world of acronyms, long, hard to pronounce medical terms, specialists, therapists, lots of extra appointments, diets and lots of advice from well meaning strangers, friends and family but no real solutions. Your head is spinning and you suddenly feel isolated with nobody to turn to that is going through what you are going through. You scour the internet for answers but you become more lost then when you logged onto the computer because there is so much conflicting information online. You are not sure where to even begin or what to search or seek out.
Take a deep breath, there are many parents right here in the community that can lend you a hand. Look up and look around, you will become an expert in recognizing these mommy’s and daddy’s because we all share a common mission, to have our children receive the best care and resources available. The best resources and information that I found for my son when he was small and even now was from talking to other parents that have children with different abilities in varying stages of development.
This community of families and their children are strong, informed, educated in the needs of their children and are like the FBI in locating resources for their children to flourish. The most amazing part of these families is that they are excited to share what they learned with you to make your road a little easier. So the next time you are out and about, look around, you may be surprised who was meant to cross your path to lend you a hand and help you find the answers you have been struggling with. Lifetime bonds are made this way!
Lisa K (Parent)