My child has autism… Birth to 5 years

Throughout this website we use the term 'autism' to refer to all Autism Spectrum Disorders.

Early Intervention

What is Early Intervention?

As soon as you suspect that your child might have autism or any other developmental delay, you should contact your local Early Intervention office and your child’s pediatrician to have your child evaluated and to get a referral to a specialist. The earlier children with developmental delays get services the more they usually improve over time.  When contacting your Early Intervention office, explain why you think your child may have a developmental delay (e.g., my child is two years old and isn’t speaking or my child doesn’t look me in the eye).  Trust your instincts. Several studies have shown that when parents suspect that their children’s development is not typical, they are usually right. It can be difficult to diagnose a child with autism before age 3, but many services, like Early Intervention services, do not require a diagnosis.  For more information on early signs of autism and what to do please read I think my child has autism.

Contact your local Early Intervention office to ask for an assessment and explore available services. The CONNECT Helpline 1-800-692-7288 can help families by providing a direct link to local Early Intervention programs. Also visit the PA Department of Public Welfare Bureau of Early Intervention Services website for more information.

 

What should happen when I call the Early Intervention office?

Someone from the Early Intervention office should contact you within 10 days of your call to discuss your concerns. If an evaluation is needed, they are required to conduct one within 45 calendar days from your call. This Multidisciplinary Evaluation (MDE) should include standardized tests, observations of the child, and interviews with parents and others who know the child well. After the evaluation, you should be informed the about any weaknesses the child has in four developmental areas.  Early intervention staff should evaluate your child in four areas:

1. Social/emotional functioning, which includes skills such as laughing, smiling, and interacting.
2. Personal functioning, which includes gross and fine motor skills, eating, toileting, and dressing.
3. Cognitive/communicative functioning, which includes skills like talking and eye contact. Cognitive is a term used to describe levels of functioning in thought processing such as solving puzzles.
4. Concentration, persistence, and pace functioning, which includes the ability to complete tasks quickly.

In Pennsylvania, if children have a 25% delay any of these areas, they are considered to have a Developmental Delay (DD).

 

Develop an Individualized Family Service Plan (IFSP)

What is an IFSP? How do I develop an IFSP?

If your child's development is delayed by 25% in one or more areas and your child is less than three years old, then you are entitled to an Individualized Family Service Plan (IFSP). (If your child is between the ages of 3 and 5 please refer to the Individualized Education Plan).  The IFSP should specifically describe the areas in which a child is having problems, goals for improvement, and the therapies and interventions that should be provided to meet these goals. As the parent, you are a critical member of the IFSP team, and should play an active role in identifying priorities and goals with the other team members. The Early Intervention personnel who evaluate your child should make recommendations regarding which services will help the child meet the IFSP goals that you have helped identify. Make sure the IFSP is as specific as possible in documenting your child’s challenges, mutually agreed upon goals, and the services your child should receive. Ask for a paper copy of the IFSP before leaving each meeting. If you have any quesitons about your role and rights as a parent or guardian, contact your State Protection and Advocacy Agency.

 

Early Intervention Services

What kinds of services can my child get through Early Intervention?

Federal regulations regarding early interventions list the following early intervention services:

• Assistive technology
• Audiology
• Family training, counseling, and home visits
• Health services
• Medical services (for diagnostic and evaluation purposes only)
• Nursing services
• Nutrition services
• Occupational therapy
• Physical therapy
• Psychological services
• Social work services
• Special instruction
• Speech-language pathology
• Transportation
• Vision services 

Your child may need some of these and not others. The Intervention Guide on this website links to reviews of many interventions that may help you decide what might work best for your child and for your family. 

Who should decide what services my child should get?

The IFSP team determines what services your child will receive and for how many hours through Early Intervention.  Remember that you are a member of this team. Other members of the team include the Services Coordinator from the Early Intervention office who worked with your family during the initial evaluation, and the therapists and educators who will provide services to your family and child. You also can invite other family members or a professional advocate to participate in the meeting if you choose, but be sure to notify the other team members if you would like to invite others to the IFSP meetings.  Click here for autism resources and advocacy groups in your county.

How can I learn more about the services available to my child?

Other parents of children with developmental delays will have valuable knowledge about how to get services and what services have worked for their children. Remember every child and family is different. What works for one child or family will not necessarily work for another.  Be sure to read books and other media that can help you understand autism and autism services.  Some general autism information can be found in the following:

• Autism Spectrum Disorders: A Transactional Developmental Perspective (Communication and Language Intervention Series) by Amy M. Wetherby (Editor), Barry M., Ph.D. Prizant (Editor)
• Could It Be Autism?  A Parent's Guide to the First Signs and Next Steps by Nancy Wiseman
• The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing by Karen Siff Exkorn
• Through the eyes of Autism (DVD), Alison Preston, Mike Russinik, Jacob Huot Pres Kraft

Advocacy websites such as the Autism Society of America, Autism Link, and Autism Speaks offer a great deal of information that will be useful to you in obtaining services for your child along with additional recommended reading material.  Click here for autism resources and advocacy groups in your county.

What happens if I disagree with the Early Intervention team about what services should be provided to my child?

The Individuals with Disabilities Education Act (IDEA) guides how states, Early Intervention offices and school districts provide special education and related services to eligible children with developmental delays and other disabilities.  To review the latest updates on IDEA please visit the National Dissemination Center for Children with Disabilities website. 

One section of the IDEA requires that the IFSP be reevaluated once a year and that periodic reviews take place at least every six months if your child has made significant progress or has regressed or lost skills. If you disagree with the IFSP or want it reviewed before the required sixth month periodic review, you can request another review by calling the Early Intervention case manager assigned to your child.  Changes can be made to the IFSP if your child is not making the expected progress.

Pennsylvania’s Education Law Center (ELC) is a legal advocacy group that provides information on the legal rights of public school students, including students with disabilities.  ELC services are free and you can contact them through their Help Line.  Please visit the ELC website first to see if your questions are answered there.  

What should I do after I receive Early Intervention services?

Once your child is receiving Early Intervention services, you should document his or her progress in a systematic way. A good way to keep track of your child’s development is to keep a journal or baby book and write a few sentences about your child’s behaviors and activities each day. For example, were there any differences from the previous day or week?  Was your child particularly well or poorly behaved that day? By keeping track of your observations, you can determine in a systematic way whether your child is making appropriate progress.

What other services are available to my family and me?

The Head Start program is offered by the U.S. Department of Health and Human Services, Administration for Children, Youth, and Families to families with preschool children age three to five who fall below a certain income level. The Head Start program offers services that can help improve your child’s development including education, health, parent involvement and social services. You must apply for admission.  Some interventions that are not covered by Medicaid can still be obtained through Head Start.  Please visit the Head Start information website or call (202) 205-8572 to find out more on Head Start and how to apply.

 

Transition

What happens when my child turns three years old?

When your child turns three years old, the responsibility for providing services moves from the Pennsylvania Department of Public Welfare to the Pennsylvania Department of Education. Planning the transition begins when you start Early Intervention services. When your child turns two years old, the official transition planning begins. A transition meeting is held usually involving a representative from the program for three years to school age (Department of Education Early Intervention), local preschool program of the parent’s choice, and the parent(s)/guardian(s) of the child.

A transition meeting may occur anywhere from 9 months to 90 days prior to the child’s third birthday and the family must be given 1-month notice about the date and time of the meeting. You can initiate the transition meeting by contacting your current Early Intervention case manager.  The transition meeting should include explanations of each program.  The transition to the Department of Education means that your child will still be receiving services that he/she is entitled to, but these services will be regulated by the Department of Education rather than the Department of Public Welfare.  The important thing to remember is to plan ahead and act early!

What happens when my child turns five years old?

There are four options available for your child as they approach school age:

1. Receive another year of Early Intervention services
2. Enter kindergarten
3. Enter a private school
4. Enter an autism support classroom. 

There are pros and cons to all of these choices, so be sure and ask questions of the Early Intervention staff about them.  For example, if the child receives another year of Early Intervention services, they will lose that socialization exposure from a kindergarten setting, but may receive more intensive therapies.  For more information please visit the My child has autism: Ages 5-18 section of this website. 

Establish an Individualized Education Plan (IEP)

How should I plan for school for my child?

The Department of Education requires that an Individualized Education Plan (IEP) be created when a student starts school.  An IEP is very similar to an IFSP. An IEP is a plan for a student’s education developed by a team that includes his or her teachers, service providers, and parent(s)/guardian(s).  Annual reviews of the IEP are required, but if a family thinks there should be changes made before the meeting, they can organize a meeting with the team at any time.  The child’s IEP will be changed during his or her first year of school based on his or her needs and progress.  The IEP will continue to be changed throughout his or her schooling, up to when he or she graduates from high school.  For more information on schooling please visit the My child has autism: Ages 5-18 section of this website.

The services and goals noted in the child’s IEP can be implemented in the home or by a private Behavioral Health Rehabilitation Services (BHRS) agency. This can be done in the regular classroom or in a resource room within the child’s regular school, which is for students with similar learning needs. For more severe disabilities, students may be taught in a classroom with fewer students per teacher.  In most of these classrooms, the teacher has a specialized background in educating children with special needs. Parts of the IEP outline may come from parental suggestions, the IEP team will come up with a plan that can include (but not limited to) the following:

• Setting specific, measurable short-term and annual goals for each of the child’s specialized education needs

• Determining which skills or areas of functioning should receive the most attention (i.e. what areas does the child need the most help in?)

• Describe support services your child will receive and how often they will be implemented (i.e. physical therapy three times per week)

For parents new to the IEP process, it might be helpful to ask an experienced parent or an advocate to attend the first few IEP meetings. They can be a good resource to ensure your child's needs will be met. Contact your local Intermediate Unit to reach the local Right to Education Task Force to speak with parents who have been in your position and can provide useful information.

If you disagree with any part of your child’s evaluation or IEP, mediation and hearings can be used to dispute them. You can get legal representation by contacting the school district and requesting contact information for an attorney who is familiar with the IEP process.

Beginning school and special education for your child

A child may be eligible for special education services provided by the public school system if they satisfy requirements for any of 13 categories of which one is autism) listed in IDEA.  The evaluative list for these categories includes a diagnosis of autism.  Please read more on entering the school system in the My child has autism: Ages 5-18 section of this website.

Getting services through Intermediate Units

Your local school district is responsible for providing services to students with special needs.  Intermediate Units provide these services if the local school district does not provide these services themselves.  The child's Multidisciplinary Evaluation (MDE) and/or the student’s IEP determine what services the child is entitled to based on their disability.

 

Additional Assistance

Paying for Services

How can I pay for my child’s services?

In general, there are four ways you can pay for the services your child receives:

• When you have private insurance, medical costs are paid for by a private insurance company. Sometimes employers pay some portion of medical insurance for their employees as a benefit of working for the company. Private insurance is available through many companies to individual families, but it is often costly. Pennsylvania passed new legislation regarding insurance companies paying for services for autism. Click here to read more about HB 1150, which will go into effect July 1, 2009.
• Through public insurance such as Medical Assistance or Medicaid, a public insurance company covers medical costs.  Public insurance provides health care coverage to eligible Pennsylvania residents based on income and savings. Read below for more about Medicaid.
• The Department of Education provides medical services through the educational system while the child is attending school.  These services are offered in the school setting and are regulated under the student’s IEP guidelines.
• Some families choose to pay for services themselves that are not otherwise covered.  The advantage here is having more control over the services provided to your child, although they will have to be compensated for out-of-pocket. Some therapists offer a sliding scale for families paying this way.

 

Medical Assistance & Social Security

What is public insurance (Medical Assistance/Medicaid) and what does it cover?

Medical Assistance (MA or Medicaid) is a program that provides healthcare insurance to eligible Pennsylvania residents who might otherwise not be able to afford it.  Eligibility is based on your income and savings.  MA generally insures people for their hospital care, doctors’ visits, nursing home care, laboratory testing and x-rays, family planning, drug and alcohol intervention, and mental health care. Most people also have their prescription drugs covered. Children with disabilities in Pennsylvania, including children with autism are usually eligible for MA.  If you have private health insurance, MA will only cover healthcare costs that are not already covered by your private insurance. 

Who is eligible to receive Medical Assistance?

• Families with children who qualify as dependents, including families not receiving welfare or TANF cash
• Children who receive federal and state adoption assistance or federal maintenance payments
• Infants and children up to age 21 who qualify
• Individuals who have disabilities or are blind (including both permanent and temporary disabled persons)
• Low income Medicare beneficiaries (up to 100% of the federal poverty level)

MA pays for wrap-around mental health services and other services that are not usually covered by private insurance policies. For disabled children of school age, the MA Loophole provision is available if the child meets the Social Security Administration’s disability standards. Eligibility is based on the income of the child, not the family.

How do I apply for Medical Assistance?

Most people can apply online using the Commonwealth of Pennsylvania Access to Social Services (COMPASS System): Apply for Medical Assistance

The COMPASS System provides the following options to further your progress in obtaining services for your child:

• A questionnaire that tells you what services you or your child may be eligible to receive.
• The application lets you apply online for services offered by Pennsylvania.
• Updating your personal information to determine eligibility of benefits when the end of your benefit period is approaching.
• You can log into My COMPASS Account to view your benefit details history. (For individuals receiving Medicaid, Food Stamps, Cash Assistance, Long Term Care, or Waiver benefits through the Department of Public Welfare.)

You can also apply by mail or at your local County Assistance Office. Different counties offer different services and programs.  Find your local County Assistance Offices listed on the PA Health Info website or call the DPW Help Line at 1-800-692-7462 between 8:30 AM and 4:45 PM, Monday through Friday.

Completing the application online should take 20-45 minutes.  You should have on hand the following information when applying for MA online:

• Household income information (i.e. job, child support, other income)
• Social Security Numbers and birth dates of all members of household
• Health insurance information
• Car insurance information
• Housing and utility information
• Resource information (i.e. bank accounts, vehicles, homes, property, life insurance)

Be sure to record your e-form number so that you may check the status of your application.

Click here to read about Medical Assistance from the Pennsylvania Department of Public Welfare website.

Social Security Income/Applying for Social Security Income

Social Security Income is a program for people with disabilities who do not exceed certain income levels. To begin determination of your Social Security Income program eligibility, please call your local Social Security office at 1-800-772-1213 and request to apply for disability benefits. You can also make an appointment online or visit your local Social Security office in person.

 

BHRS or Wraparound Services

What are BHRS or Wraparound Services?

Behavioral Health Rehabilitation Services (BHRS) or wraparound services are provided to children between the ages of two and twenty-one who have a psychiatric diagnosis, including autism. Wraparound services are temporary services, prescribed by a physician that “wrap” around existing services. The goal of BHRS is to help the individual work towards independence. Services focus on skill development during daily activities at home, at school, and/or in the community.

Getting services through wraparound services

Wraparound services are available to a family if the child has a valid Medical Assistance (MA) card in the state of Pennsylvania.  Click here to learn more about applying for Medical Assistance. The goal of BHRS is to help the individual work towards independence. It is common that the family will first meet with an interdisciplinary team in preparation for the actual therapy. The interdisciplinary team can be made up of many individuals who work closely with the child on a regular basis, such as relatives or teachers. The child is first evaluated to determine strengths and weaknesses that should be addressed in therapy, and the practitioner creates a Behavior Treatment Plan using resources such as the child’s speech and/or occupational therapists. Parents should request a paper copy of the Behavior Treatment Plan. The following services may be provided by BHRS:

• Behavior Specialist Consultant (BSC)/ Mobile Therapist (MT)- provides guidance to those providing the services and interventions.     
• Therapeutic Staff Support (TSS)- provides one-to-one behavioral interventions based on the goals of the treatment plan.  
• Psychological Evaluations- a licensed psychologist will evaluate medical necessity for services.
• Psychiatric Evaluations- The specialist or primary care physician will conduct evaluations and if needed, prescribe medication when needed.

What is the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program?

The Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program is available for children under 21 years of age and serves as their Medicaid benefits.  The services offered by the EPSDT are deemed wraparound services.  The goal of this program is to identify conditions that can result in a developmental delay.  In addition to screening services, EPSDT covers diagnostic and treatment services that are required for acute and chronic physical and mental health conditions.  EPSDT can provide many services including speech pathology, physical therapy, dental care, wheelchairs, personal care aide, and medical equipment.  There are three types of screening services provided by EPSDT:

• Initial screen- a check-up that is provided when a child first enters the Medicaid program.
• Periodic screen (well child check-up)- a regularly scheduled interval screening visit.
• Interperiodic screen- a check-up/assessment that can be scheduled any time outside of a regularly scheduled visit.  A parent can request such a screening if a child is displaying signs of illness or a change.

The content of screening services is mandated by law to include:

• Comprehensive health and developmental history (developmental assessment of physical and mental health history)
• Comprehensive physical examination
• Immunizations, based on the current approved Advisory Committee on Immunization Practices schedule
• Laboratory tests, including but not limited to mandatory lead screening
• Vision, hearing, and dental screening
• Health education and future guidance

If a health problem is found, the EPSDT benefit covers necessary medical services to correct or relieve it, whether or not these services are covered by the state’s Medicaid program.  These services cover individuals until age 21.  EPSDT rules state, “Federal financial participation (FFP) is available to cover the costs to public agencies of providing direct support to the Medicaid agency in administering the EPSDT program.”

Please contact the Department of Public Welfare for EPSDT program administration (provider and consumer outreach, appointment scheduling, tracking, etc.).

*UPENN does not advocate or endorse any specific provider/organization. The providers and organizations listed on this website are intended for informational use only.