A Parent’s Guide to Pediatric Therapy: Putting the Pieces Together

Entering the world of pediatric therapy can be overwhelming for parents.  PT, OT, ST, DT, SC, IFSP, IEP, EI – what do all these mean?   Parents are thrown into this world at a time when they are still trying to understand their child’s diagnosis.  Although this can be a very emotional time for families, it is important to understand what exactly is going on and who are these people working with your child.

Early Intervention (EI)
In 1986, the U.S. Congress created the mandate for a range of services to be provided to infants and toddlers with disabilities, through what is referred to as “Early Intervention.”  This is Public Law 105-17, which established special services for the youngest members of our society. This was due to “an urgent and substantial need” both to “enhance the development of infants and toddlers with disabilities and to minimize their potential for developmental delay.”

Each state is provided grants from the federal government to provide comprehensive services to infants and toddlers with disabilities. A lead agency in each state administers the statewide program. Each state establishes criteria for eligibility within parameters set by the federal government. In Tennessee, the EI program is TEIS (Tennessee Early Intervention System).

TEIS is a “voluntary educational program for families with children ages birth through two years of age with disabilities or developmental delays.”  According to TEIS, the principles of EI are to “support families in promoting their child’s optimal development and to facilitate the child’s participation in family and community activities. The focus of EI is to encourage the active participation of families in the intervention by imbedding strategies into family routines. It is the parents who provide the real early intervention by creatively adapting their child care methods to facilitate the development of their child, while balancing the needs of the rest of the family.”

After the referral to the EI system, a service coordinator (SC) is assigned to each child and their family.  This SC will help guide families through the EI system and will network and assign other professionals to work with each child and family as needed.  These services may include: screening and assessment; family training, developmental therapy (DT),  speech therapy (ST), occupational therapy (OT), physical therapy (PT), audiology services, etc.  Depending on the state, these services are provided, with some exceptions, at no cost to the family.

Some children will be referred to their state’s EI system soon after birth.  For example, children born with a diagnosed condition (such as Down syndrome, cerebral palsy, spina bifida, cleft palate, etc) will be referred to their state’s Early Intervention (EI) system as soon as possible in order to start receiving services.   Other children may not show any signs of a developmental delay until they are older and their pediatrician, teacher or parent will refer them for services when concerns are noted.  In most states, any child can be referred to their state’s EI system for screening and evaluation if concerns are noted before their third birthday.

Individualized Family Service Plan (IFSP)
An IFSP is the plan written by the EI team.  Families are welcome to invite anyone to the IFSP meeting.  During this meeting, measurable goals will be developed for the child and family.  These goals will be targeted over the next few months.  During this meeting, the family, SC and other team members will talk about the child’s progress towards their goals.  If other supports and services are needed, those services will be discussed at this time.

Transition
Prior to the child’s third birthday, the transition process will begin.  Once children turn 3, they move from the EI system to the school system.   Part B of IDEA (Individuals with Disabilities Education Act) applies to children from 3 – 21 years of age. This program provides special education and related services (e.g. PT, OT, ST, etc).  These services are provided in the least restrictive environment and ensure local access for services.  Most of the time, these services are provided in your neighborhood school.  All children will not be eligible to enter into preschool special education programs. Each program has their own set of eligibility requirements.

During the transition planning meeting, parents and their child’s SC will meet with members from Part B to discuss the next steps, particularly, how to prepare your child for the transition out of EI.  An IEP (see below) meeting will be held to determine the services your child will receive after the transition.

Individualized Education Program (IEP)
The IEP is a written educational plan for each child with a disability that is developed, reviewed and revised during a meeting with the child’s parents, teachers, therapists and other school personnel.  A child must have an IEP in place before receiving services with the school system under Part B services.  During the IEP meeting, results from recent evaluations are reviewed and goals and outcomes are developed and addressed.  A parent may invite anyone to an IEP meeting.  If other supports and services are needed, they are discussed at this meeting.

Private Pediatric Therapy
For children who may not qualify for EI or Part B services, or for those who might need additional therapy, private therapy is an option.  Pediatric therapy covers the ages of birth to age 18 or in some clinics, up to 21 years of age.  These services are considered “private therapy” and are paid for by the child’s insurance plan or private pay by the child’s parents.   Therapy can be provided in the child’s home, school, clinic or other community setting.

Pediatric therapists work closely with the child’s parents, teachers and other professionals.  Many will implement a team approach to best meet the needs of the child and their family.  There are many different agencies and therapy approaches.  Each family should choose a therapist they are comfortable with and find the best therapy approach for their child.

Traits to Look For In a Therapist:
There is a shortage of pediatric therapists across the nation.  If you are looking for a private therapist, some traits to look for include:

  • Caring and Compassionate – Your child’s therapist should care about your child and family.   Many families will work with the same therapist for years and you want to have a good relationship with your child’s therapist.
  • Positive and Encouraging – In pediatric therapy, we do not yet know the extent of your child’s abilities.  Look for a therapist who will work with your child and encourage them to reach their goals in a positive manner.  All children should be encouraged to reach their full potential in all areas of their development.
  • Patient and Flexible – Working with children is a lesson in patience and flexibility.  Sometimes children get tired.  Sometimes they cry.  Sometimes they fall asleep.  Therapists must be able to make adjustments as needed and be creative enough to completely change their plan for the day based on the child’s needs at that time.
  • Empathic and Understanding – Having a child with special needs can be overwhelming.  Parents will have a lot of feelings to work through and a lot of questions about their child’s diagnosis and their progress in therapy.  Find a therapist who understands and listens to your concerns.  However, it is important to understand that parents are the only ones who can make decisions that directly impact the child.  Therapists can give recommendations (and if parents ask –opinions about certain situations), but parents are the ones to make the final decision.

Understanding the world of pediatric therapy can be overwhelming.  Understanding the process and finding a therapist you are comfortable with will help you through this process. For more information about finding a therapist in your area and to find out more information about EI and Transitioning to Part B services, please follow the links below:

American Speech-Language Hearing Association

American Occupational Therapy Association

American Physical Therapy Association

Early Intervention

School Age

 

 

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