UVM Medical Center

Description:

“My child’s been diagnosed as autistic. What do I do next?” Molly Bumpas guides families through key terms, timelines, and other vital information involved in navigating the healthcare system and supporting children on the autism spectrum.

A full transcript appears below.

Hello! And welcome to this presentation on navigating the road to supports for your child.

My name is Molly Bumpas. I am a certified speech, language pathologist, and a board-certified Behavior Analyst. I’m also a clinical assistant professor at the University of Vermont in the Communication Sciences and Disorders Department. and finally, I also work as a clinician in the autism assessment program at the University of Vermont Medical Center.

“What do I do next?”

So, this is the most common question I hear from parents. “What do I do next?”

Whether they are at our autism clinic for an assessment, or whether they are waiting for an evaluation. Parents want to know what the next steps are to help their child.

My hope is that this presentation will give you information about possible resources and supports that may be available for your child and your family.

It’s a lot of information to navigate, and having a lay of the land will hopefully help ease this process for you.

The first stop is to check in with your child’s pediatrician. Explain your concerns and your child’s current needs, the Pediatrician and medical home should be able to refer you to appropriate therapies and programs. These could include early intervention services. Your Medical home may also have a care coordinator that can help you. Look at resources in your area and obtain appropriate referrals. Another good thing to do is to contact your health insurer to see what they cover for therapies such as speech or occupational therapy.

Also consider signing up for Medicaid in Vermont. Children under the age of 19 may be eligible for Medicaid if the household income is below 312% Federal poverty level. But even if you are not eligible due to your household income. If your child has a diagnosis of autism, they may be eligible for Medicaid. Despite your income level.

You can find out more information about getting Medicaid at vermonthealthconnect.gov.

Why get Medicaid if you already have private insurance?

Because some services are available only through Medicaid.

Some examples of these are children’s personal care services.

If your child needs extra help with daily self care cps may pay for one-to-one assistance for your child for help with daily routines, such as dressing, bathing, grooming, toileting, eating, and or mobility.

Contact your local Designated Agency to ask about an assessment for children’s personal care services. We’ll talk about what designated agencies do a little later on.

Another Medicaid benefit is not emergency medical transportation and reimbursement. If you are transporting your child to a Medicaid billable appointment, such as speech, therapy, or other needed therapies. You may be eligible for mileage reimbursement.

And finally, Medicaid may cover diapers for your child after the age of 3.

The First Step

So the first step. One of the first things that you’re doing as you’re finding out about all of these supports and getting referrals. You’re creating a team for your child. This is a priority. There are so many professionals who can help you and help your child. But you, as the parent or the caregiver are the most important members of the team. You know your child the best, and you are your child’s strongest advocate. Communication and collaboration are really important to successful outcomes.

“What do all of these letters mean?”

There are so many abbreviations to learn when your child is referred for developmental evaluation. Don’t worry. I’m going to help explain.

SLP

So who is an SLP or a speech language pathologist? An SLP helps children communicate, including expressing themselves and understanding others. Kids can express themselves in a variety of ways through words, signs, pictures, or other forms of alternative or augmentative communication. An SLP may also be able to help with feeding or swallowing challenges if it’s needed.

OT

Who is an OT, or an occupational therapist? An OT helps children with activities of daily living and overall regulation through everyday routines. They could help with sensory integration, which is difficulty, processing sensory information through movement, touch, smell, sight, or sound.

A lot of our children on the autism spectrum have difficulty with sensory integration challenges.

They could help with emotional regulation, which involves staying in an optimal state of arousal, to learn and engage with others. OTs also work with fine motor skills. Our small motor movements, such as movements of the hands for things that kids do, such as cutting or writing or coloring. OTs also may help with feeding issues and visual perceptual skills.

PT

Physical therapists or teams help a child with large motor movements and range of motion in order to improve physical activity. This could include sitting, walking, running, jumping. You may hear these large motor movements referred to as gross motor scales. So a PT helps children who need help improving their gross motor skills.

BCBA

What is a BCBA? A board certified behavior analyst — a BCBA — oversees an ABA program. That’s a lot of abbreviations.

ABA or applied behavior analysis is a science that helps change behavior, both increasing desired skills as well as decreasing, challenging behaviors. An ABA program for a child on the autism spectrum should include individualized goals for that child made with the family’s, input and these goals should support a child’s autonomy. ABA therapy can be provided in a variety of settings depending on the provider’s service model. It may be in a special clinic. It may be in your home, or even in your child’s school. There are many ABA community providers in Vermont, and they typically accept Vermont, Medicaid and some private insurance.

If you have Medicaid, your child may be able to access ABA intervention with a referral from your doctor. even if they have not received an autism diagnosis and are waiting for an evaluation. Ask your medical home about this

Eating Therapy

Eating therapy works with children who have difficulty with chewing foods, or safely swallowing foods. Or your child may have challenges eating new foods, or have an aversion to certain food textures. This type of therapy could be done by a variety of professionals depending on their training. Sometimes occupational therapists help with feeding. Other times, speech-language pathologists help, or some other professional.

Assessment

We just talked about some common therapies for children with developmental delays and neuro-developmental disabilities.

The first step is a thorough assessment to determine your child’s strengths and their challenges. The Individuals with Disabilities Education Act, or IDEA, is a federal law that states children with disabilities, including autism, are entitled to early intervention and special education services. The IDEA was enacted in 1975, and updated in 2004. This law means that your child is eligible for free education that addresses their specific needs.

So how do you get these services started?

If your child is younger than 3 years old, you start with Children’s Integrated Services, the home of early intervention in the State of Vermont. The contact for early intervention varies from region to region depending on where you live. But early intervention can provide referrals to appropriate therapies, coordinated child services and provide parent support. Your medical home can help with this referral, or you can go to dcf.vermont.gov/contacts/partners.

You can refer as soon as you suspect a child may have a delay. They do not need a diagnosis to be referred to early intervention. Services Services can be provided in home as an option in some regions or some families elect to get their early intervention services at their child’s child, care where they are during the day.

Your first step is having a provider contact you to set up a time for your child’s initial evaluation. An initial evaluation will be done by an early intervention clinician. This evaluation will assess your child’s strengths and challenges and determine eligibility for services. Typically, a child must demonstrate a 25% delay in one or more developmental areas to qualify for early intervention services. Once this eligibility is determined through the evaluation, a One Plan will be written.

A One Plan

A One Plan is an individualized family service plan that you and the early intervention team will write together. It will describe your child’s specific intervention, needs and goals, and the types of services your child and family will receive to meet these goals. The One plan will also spell out the frequency that these services will occur.

As intervention continues, you will receive periodic progress updates on what skills your child is learning. All of the early intervention services are coordinated and provided in a location that is comfortable to you, whether it’s your home. your child’s child care or preschool.

Early intervention may include a lot of different providers depending on your child’s needs.

It may include a speech-language pathologist, nursing support, occupational therapy, nutrition support, physical therapy, counseling, or a developmental educator. Vision, therapy, family training. Or hearing supports and services.

Questions to keep in mind as you engage in an early intervention program with your child. Does the intervention program engage your child sufficiently?

Are the staff members qualified to provide this intervention?

Are the teaching methods effective? Is your child meeting their goals? Does the program involve you as family members? You are the most important member of your child’s team because you are an expert in your child.

ECFMH

A separate division of children’s integrated services is early childhood and family mental health program: E. C. F. M. H.

ECFMH provides clinical intervention for children ages 0 to 8 years old, who are experiencing social, emotional, or behavioral struggles and their families. This program may include a clinical assessment service, planning and coordination, individual and group community supports, individual and family therapy and medication monitoring.

This program does not require an autism diagnosis for eligibility. If your child is 3 or over, he will contact your local school district. That’s right. At age 3. Your child services will move from early intervention providers to your local school district.

The first step is to request a comprehensive evaluation from your school district. This evaluation will determine a child’s eligibility for early childhood, special education services. Eligibility involves determining if there is an adverse effect on your child’s learning. Then your child may qualify for an IEP, or an individualized education plan. This plan will list your child’s strengths and challenges annual goals and short-term objectives an outline of services that your child will be provided from an SLP, a special educator, an OT, etc.

Families are a big part of this process. Some districts have preschools that your child may qualify to attend to receive their services. Some children may receive these services and private child care settings. It’s important to note that services should be based on what the child needs according to the evaluation, not on a specific diagnosis.

Sometimes families want or need extra support and navigating the whole IEP process.

That’s where the Vermont Family Network comes in.

Vermont Family Network

The Vermont Family Network, or VFN, is a nonprofit that specializes in supporting children and families in Vermont, particularly children with disabilities. They employ a family support staff, who work in advocacy, explaining systems and processes to you and helping you understand paperwork. Most family support staff also have a child with a disability. So they’ve really been there and can understand what you’re going through.

VFN also has a parent match program where they will pair you with another parent whose child has similar challenges or similar diagnosis as your child. The helpline at the Vermont family network is 802 876-5315.

In addition to going through early intervention or early childhood, special education, there may be supplemental services for your child available through your private insurance or medicaid. This can include SLP services, OT services, ABA services, or physical therapies. Check with your insurance provider regarding coverage on your specific plan.

Designated Agencies

Another important step in this journey is to contact your local designated agency. Designated agencies are private nonprofit service providers that are responsible for ensuring that needed services are available through program delivery, local planning, service, coordination and monitoring outcomes within their region.

Each region of Vermont has a different designated agency.

Designated agencies also may help with flexible funding, additional care, coordination, and family managed respite funding.
Some programs through designated agencies require that your child has an autism diagnosis.

Family Managed Respite

The first one of these is family managed respite. This is funding to provide a child’s caregiver, a break or respite. The child must have medicaid and an identified developmental disability to qualify.

Flexible Family Funding

Another program available through designated agencies for a child in the family with an autism diagnosis is flexible family funding. This is provided to eligible families of children to help pay for any allowable child needs, such as respite, care, assistive technology, or recreational activities.

Additional Child Care Supports

I also want to mention that there are additional child care supports in Vermont as well. First, there’s the special accommodations grant. This grant is helpful for families whose child is experiencing difficulty in a child care setting. The child care provider can apply for grant that will pay for a one to one staff person for your child in that child care setting. This is intended to help ensure successful inclusion of that child.

There’s also child care financial assistance. This is also known as a subsidy, and this can help your family pay for child care. This program does have income eligibility requirements and the family must live in Vermont.

Your child does not need an autism diagnosis to potentially access these services. They are provided through the Child Development Division.

I want to emphasize again that teamwork is important.

Whether your child is in early intervention or early childhood special education, team communication is vital to success. Open communication is important for effective collaboration. You can make a plan or how this communication will occur, whether it’s regular team meetings, email communication or phone calls. Regular team meetings are helpful because all the providers on the child’s team and the parents, they’re all working with their child in consistent ways. You can discuss what’s working well and what’s not working.

When everyone works together it can make a big difference for our kids and their progress.

Your Own Mental Health

I want to end with the importance of taking care of your own mental health as a parent. Many parents express that they do not have enough time in the day to take care of themselves, but you cannot optimally take care of your child and your family if you are always tired and stressed. Even though you may feel like your needs come last, they can’t or won’t be good for you or your family.

I encourage you to monitor and care for your own needs, your physical well being and your emotional well-being, take breaks when you can, and reach out to others for support. I realize this is easier said than done. But remember: you are important.

Thank you so much for reading through this presentation today. I hope it’s helped lighten the load a little bit as you navigate the road to supports for your child.