And Why They Are Important for Your Autistic Child

Ian’s Special Gifts Blog

Through our journey with Ian’s autism, we have learned so much and yet still have mountains of information to learn as we try to help him develop past four years old.  We have known for years that we needed a doctor different than just a pediatrician, but we were not sure exactly what type of doctor we needed.

When Ian was around four, the pediatrician he was seeing at the time referred him to a developmental-behavioral pediatrician.  Unfortunately for Ian, this particular doctor did not accept his insurance so he was referred to a neurologist.

The neurologist assessed his development at that point, ordered an MRI to check for brain damage, and also ordered DNA testing to check for genetic disorders, but he really did not address his developmental needs.  We met with a physician’s assistant every six months for three or four years, but other than prescribing medications to help Ian sleep and questions about how he was doing, we did not get much instruction on how to help Ian grow and develop more fully.  We were disappointed and frustrated.  When the physician’s assistant left the practice, we knew it was time to make a change too.

We asked Ian’s pediatrician for a referral to another neurologist, and what a stroke of luck that turned out to be!  When we called to make the appointment with the neurologist, we were told that he does not see autistic patients but that another doctor in the practice specializes in autism.  His first appointment was seven months away, but we took it because we so desperately wanted this doctor to see Ian.

The developmental-behavioral pediatrician we had an appointment with happened to have an opening two months before our scheduled time, and we gladly changed our appointment to get in right away.  Seeing this doctor with Ian was definitely a revelation.  I believe that seeing this doctor when Ian was four and no later than five would have made a world of difference in his development.  This doctor immediately completed an updated assessment on Ian, placed referrals for a new speech and occupational therapy company and referred him to an ABA therapy company that takes children over the age of nine.  The doctor wanted Ian back in ABA therapy as soon as possible.  He also gave us instructions on how to complete activities with him at home to improve his focus and reactions to others.

Discussing Ian’s current developmental stage with the developmental-behavioral pediatrician was not all good news, but we appreciated his honest evaluation on Ian’s current situation.   We are now aware that by the age of nine, as Ian is, most children have developed all the sounds they will need to talk even if they aren’t saying words.  Ian does not make all of those sounds, so there is a better than average chance that he will never talk.  At this point we need to decide if we are going to train him to use a speech device or sign language to communicate with others.  The doctor indicated that using both forms of communication is confusing to Ian which made sense to us when we thought about it.  We are so grateful for finally finding the right doctor to help us with Ian.

Seeing a developmental-behavioral pediatrician for your child once you have a diagnosis is critical to their development.  According to the WebMD Children’s Health Guide,

         “Behavior and development pediatrics is a specialty that deals with children who are not following the expected developmental path or have concerning behavior.  A developmental and behavioral pediatrician assesses              children’s development, learning skills, and behavior and suggest remedies.  They try to find underlying causes for deviations in development and behavior and coordinate treatment to move children toward the                          expected development pathway…….They have the training and  expertise to assess your child’s development and social skills and detect any divergence from the norm.  They consider the medical and psychosocial                aspects of children’s and adolescents’ learning, developmental, and behavioral problems and advise appropriate treatment.”

Children with autism usually have very poor social skills and don’t respond appropriately to others.  They are often oblivious to people around them and don’t interact well with other children in a play situation.  They are often locked in their own little world, as Ian is, much of the time.  Many autistic children have behavioral issues that are difficult for parents or teacher to control.  Their stemming or squealing can be disruptive to classrooms or any large gathering of family or friends.  Some autistic children can be aggressive when frustrated and aggravated.  The developmental-behavioral pediatrician looks at all of these factors when assessing the best plan of action for a child.  Having a doctor who understands all of the idiosyncrasies of your child is invaluable.

There are so many advantages to having a developmental-behavioral pediatrician in your arsenal of medical personnel for your child.  Below is a list of a few advantages of working with a developmental-behavioral pediatrician.

1. Specialized Assessment and Diagnosis
   1. They provide a detailed evaluation and diagnosis of autism symptoms.
   2. The recognize co-occurring conditions and behavioral challenges.

2. Tailored Treatment Plans
   1. They provide individualized treatment plans based on your child’s specific needs.
   2. They collaborate with multidisciplinary teams (therapists, educators, etc.).

3. Behavioral Interventions
   1. They implement evidence-based behavioral interventions.
   2. They target social, communication, and behavioral challenges.

4. Family Support and Education
   1. They provide guidance and support to parents and caregivers.
   2. They educate families about autism and effective strategies.

5. Medication Management
   1. They prescribe and manage medications, if needed.
   2. They coordinate care between different specialists and service providers.

If you are just beginning your journey with autism and/or your search for a developmental-behavioral pediatrician, ask your pediatrician for a referral first.  If your pediatrician does not know one, then google “Developmental-Behavioral Pediatricians” in your area which should give you a list of specialists to consider.  Read reviews from other parents as well as the doctor’s bio on their website.  Select two or three that you feel might be a good fit for your child and take these names to your pediatrician and ask again for a referral.  Check to make sure the doctor’s practice accepts your insurance before asking for the referral.

The earlier you can take your child to a developmental-behavioral pediatrician, the better for you and your child.  A little research on your part and asking for a referral can make a huge difference in the rest of your child’s life.  A developmental-behavioral pediatrician is an important piece of your child’s autism journey.

Thanks for joining us!

Linda

Ian’s Special Gifts Blog

Finding help for your autistic child or grandchild can be a frustrating journey.  We have run into brick walls time and time again trying to get help for Ian, but we have learned through the process.  In this blog post, I am sharing a little information that I hope will help you now and into the future as you travel this journey with your child.

First, if you have a formal diagnosis of autism or any other developmental, medical, physical, or neurological disability for your child, I urge you to contact the Social Security Administration (SSA) to see if your child will quality for Supplemental Security Income (SSI).   According to the Social Security Administration’s site,

“The medical standards for disability are generally the same for Social Security and Supplemental Security Income for people over the age of eighteen, however, there is a separate definition of disability under SSI for children from birth to eighteen years of age.  The medical standard is based on the severity of the disability; financial need is not considered at this step in the eligibility process.”  

To qualify for SSI, the SSA has medical criteria to help determine which children with autism qualify for benefits. You will need medical documentation of significant deficits in verbal and nonverbal communication as well as social interaction.  Your child will also need to have significantly restricted and repetitive patterns of behavior, interests, or activities as stated on the “Special Needs Answers” website.  The Special Needs Answers website also states that children must also have an extreme limitation in one, or marked limitation of two, of the following mental functioning domains:

• Understanding, remembering, or applying information
• Interacting with others
• Concentrating, persisting, and maintaining pace
• Adapting or managing themselves

The funds received from SSI can be used to help defray the costs of therapy, educational programs and summer camps, communication devices and sensory tools, and respite care.  Assistance with these costs can be extremely helpful for families struggling with the costs of caring for a special needs child.

The Social Security Administration does have income levels that they consider when determining if a child will receive SSI.  Any income or resources the child receives are considered first and then the income and resources of the family members are noted.  As an example, my grandson, Ian, was receiving SSI payments when his dad passed away two years ago.  When he began receiving survivor’s benefits from Social Security, his SSI payments were reduced so that the combination of the two payments did not exceed his previous SSI payments.  You will need to check with SSA to determine if your child’s and your family’s incomes fall within their income guidelines as you begin the application process.  

To begin the application process, log on to the Social Security Administration’s web site and fill out a Child Disability Report on line.  Once you submit the Disability Report, a representative from the Social Security Administration will contact you by phone to begin the application process, or you can call them at 1-800-772-1213 to apply or schedule an appointment to begin your application. 

You will need to have a good bit of documentation ready for the appointment beginning with your child’s social security number and birth certificate.  You will need to have as much medical documentation as possible along with proof of income for your family like pay stubs and bank account statements.  If your child attends school, they will probably ask for names of teachers, school records, therapy center records, and so forth.  The more information you have to prove your child’s condition, the easier and faster the process will go.

Just remember that getting SSI is like everything else with the government – it is a process.  It will take a few months, and you might be asked for additional documentation along the way.  Don’t get frustrated or give up because that extra income for your child is worth all of the work. 

In most states, a child on SSI is automatically enrolled in Medicaid which can be extremely helpful for most families.  Even if you have an employer sponsored insurance covering your family, Medicaid becomes the secondary insurance and pays what the other insurance doesn’t saving you a lot of money in co-pays and deductibles.  Medicaid is a good primary or secondary insurance for your child.

Secondly, there is a website called Navigate Life Texas (navigatelifetexas.org) which is supported by Texas Health and Human Services (HHS).  As stated in the About Us section of their website,

“This project was created to inform and empower parents of children with disabilities or special health care needs.  Health care, education, insurance, transition to adulthood and how to connect with other parents are among the many topics found on their site.  Navigate Life Texas was developed by parents, for parents.  Most of the content is written by parents of children and adults with disabilities or special health care needs.” 

There is a wealth of information on this site that will be helpful to all parents of special needs children.  I urge you to log onto their site and review all of the different areas of information they provide.  I feel sure you will find something that you will be happy to have learned.

Once you find out your child has autism, other developmental delays, or neurological, medical or physical disabilities, please go on line and look up Navigate Life Texas.  This site has so much to offer you. 

When I first found out about Navigate Life Texas, I didn’t even know enough to ask about all of their services.  I only knew they were a state sponsored program.  One of the most important bits of information I learned from speaking with someone from their organization was to sign Ian up for everything I possibly could within their Medicaid Waivers program.  As their website states:

“Texas Medicaid waivers are a gateway to getting services for your child. We don’t want to tell you what to do, but we strongly suggest that you consider adding your child to the waiver interest list(s), which many parents call “waiting lists,” if you haven’t already done so.

Even if you hope your child will never need those services, it is important that they be added to the interest list for any program(s) that might meet their needs. Your child might have to wait a long time to get services through the waiver. You can always decline the services once your child moves to the top of the list…some lists have more than a 15-year wait time.

Waivers let states use Medicaid funds for long-term home and community-based services for people with disabilities or special health care needs in order to help them live in the community.

Some of the services you can get with a waiver are:

• • Personal care for help with things like bathing or dressing
  • Nursing care
  • Home modifications like ramps
  • Car modifications
  • Respite care
  • Certain therapies

The name Medicaid “waivers” explains exactly what this program does – it “waives” Medicaid requirements for the services listed above.  This means that the usual Medicaid requirements, like family income, don’t apply to your child’s situation.  These waivers can save you an enormous amount of time and frustration in your efforts to secure long term services as your child grows through their teens and into adulthood.

Since Medicaid is a government program administered by the individual states, each state has its own program designed to assist special needs children and adults.  Navigate Life Texas is the program in Texas, but all fifty states have a program.  To find out what programs your state might have available and how to apply for services, begin your search by contacting the Department of Health and Human Services for your state and inquire about Medicaid programs and Medicaid Waiver programs.  That department should be able to point you in the right direction and provide information you will need to get started with their waiver program.   I encourage you to at least check out this program for helpful information now and helpful services as your child becomes a teen or young adult.

I hope this information has been helpful to some of you reading our blog.  If any of you have more information to add to either of these resources or other information you would like to share on our blog, please send them to me through the “Contact Us” page on this site to share with our readers in a follow-up blog. 

Thank you for joining us.  We look forward to our next meeting, but until then, keep putting those puzzle pieces together.

So long!

 Linda