• EI placements
  
• Early Intervention classrooms
  
• Other educational settings for young children
  
• Monitoring progress in EI
  

The document that spells out these needs and the services that will be provided to meet them is the Individual Family Service Plan (IFSP), which should be based on comprehensive evaluation of the child. This document should be created at an IFSP meeting, which you will be invited to attend and contribute to. Although it's a good idea for both parents and practitioners to write down their ideas for goals and interventions in advance, the IFSP itself should not be written in advance and simply handed to the parents to sign.

The first page of the IFSP is for basic information on the child and on the team members present at the IFSP meeting, including contact information for each of them. It also summarizes the services to be provided, who will provide them, how often they will be provided, and where they will be delivered. The details of these services will be entered on the pages for goals and objectives later in the IFSP. Accordingly, this section should not be filled in until the goals and objectives have been set. They will dictate which services and how much of them will be required for your child. Your cover page should be similar to the one shown in Figure 9-1.

One or more pages of the IFSP summarize the evaluation of your child. These pages should cover medical information, psychiatric diagnosis, and the results of hearing, vision, and developmental screening. This information is entered on forms similar to the one shown in Figure 9-2.

Finally, the IFSP lists specific goals and objectives for the EI team to meet, and explains how this will be done. These goals will be developed by the team at the IFSP meeting. You are part of this team. You can bring your own goals to IFSP meetings, and you should make sure that your ideas are taken seriously by the rest of the team.

There will usually be goals in the areas of cognition, fine- and gross-motor development, communication, social skills, and self-help skills. Most of these are long-term goals.

It's good to keep these overall goals in mind as you develop the IFSP, but you'll want to break them down into small, manageable steps in the final document. For example, you might have the long-term goal "Billy will learn to say his name." To meet this goal, the team might put steps into the IFSP such as:

1. Billy will understand the concept of names.
2. Billy will associate his name with himself.
3. Billy will produce the sounds in his name.
4. Billy will say his name.
5. Billy will say his name when he sees a picture or mirror image of himself.
6. Billy will use his name in response to the question, "What is your name?"

Figure 9-3 shows a sample IFSP page for goals and objectives. Your EI program may use different forms, but they should include space for all of the items shown. Each goal item should include information on what services will be provided, how progress will be measured, and who will deliver the services needed.The IFSP can also include services needed by the whole family to help you care for your child. For example, these services might include parent education classes, the services of a behavior expert who can help you with home discipline problems, or assistance in finding and accessing community resources.

EI placements

Ideally, the IFSP will dictate the proper placement. EI placements commonly used for autistic spectrum children include:

• Home-based services. Programs in this category can range from sending an SLP or parent consultant into the home once a week to implementing a 40-hour-per-week applied behavior analysis program with extensive wrap-around services. For very young children with severe impairments, such as extreme sensory sensitivity, home-based services often make the most sense. Home-based programs may include direct therapeutic and educational services, training and supervision for parents and volunteers working with the child, and assistance with medical procedures and care needed to allow education to take place.
• Direct services. This category includes all types of professional services, such as speech therapy, occupational therapy, physical therapy, and psychological therapy, that are delivered independent of each other in a school (but not as part of a preschool program), clinic, or other setting outside the home. For example, the IFSP might specify that your child is to receive one hour of speech therapy three times per week at the university's speech clinic, or physical therapy for 45 minutes twice a week at a clinic. These services may be delivered by professionals or facilities under contract with Early Intervention, or by practitioners working directly for the EI program.
• School-based services. This category includes all services delivered as part of a public or private preschool program at the school site. Therapeutic services may be integrated into a special or typical preschool program, or may be delivered as pull-out services for which your child leaves the class for one-on-one or small-group work.

A primarily home-based program goes the furthest to build a strong relationship between the child and his parents, which will be the building block for all later social interactions. It takes place in a familiar, non-distracting environment that has probably already been made appropriate for the child's sensory needs. It eliminates lost time and problems related to transporting a preschool child to school (many EI programs actually bus infants and toddlers across town). It also provides the best stage for intensive, one-on-one intervention using applied behavior analysis, floor-time play therapy, and similar techniques.

It is also extraordinarily difficult to get approval for. One tool that may help you win this battle is a thorough and accurate financial appraisal that compares the cost of an intensive home-based program in the early years to twelve years of aide services, residential placement, or private placement.

Early Intervention classrooms

For many children with a diagnosis of PDD-NOS or atypical PDD, a preschool setting with other children is considered the best placement. That's because one of the hallmarks of these disorders is differences in how the patient relates to others, plays, and learns. Spending time with other children in a structured setting can be very beneficial for developing more age-appropriate social skills.

Of course, an autistic spectrum child should never simply be plopped down in a room full of screaming three-year-olds and left to fend for herself on the grounds that it's "therapeutic." Attention must be paid to your child's special needs, deficits, strengths, sensory issues, and so on.

EI preschools come in four major flavors:

• Regular preschool classroom, with or without special support. Also called a full integration setting or mainstreaming, this might be a Head Start or similar preschool classroom. Your child would attend preschool with therapeutic services, classroom adaptations, and personal support, such as an aide, as needed. These services, adaptations, and supports must be written into the IFSP.
• Supported integrated preschool classroom. Also called a reverse integration setting, because it's the nondisabled students who are integrated into a special program rather than the other way around. This is a specially created preschool setting that brings together a small group of children with disabilities and children without disabilities. Therapeutic services, classroom adaptations, and personal support are provided to each child with a disability according to his IFSP. Children in a supported integrated classroom may have a variety of different disabilities, such as developmental delay, Down's syndrome, or cerebral palsy. Often autistic spectrum children are placed with children who have various speech and language disabilities, such as cleft palate, stuttering, and apraxia. Some supported integrated classrooms mix only children with PDDs and normally developing children. In these cases, the severity of autistic behavior may range from severe to mild.
• Special preschool classroom. This is a specially created preschool setting for children with disabilities only. The children may have a mix of various disabilities, or all may be somewhere on the autistic spectrum. The classroom may be part of a larger school with other types of classrooms.
• Special preschool. This is an entire preschool program created specifically to work with children who have disabilities. It may be within a larger school program that also educates school-age children. It may be owned and run by a public school district, or it may be a private school that contracts with the Early Intervention program to provide services. If it is private, EI and/or the school district should pay the full cost of tuition if it is judged to be the most appropriate setting for your child.

There are positive aspects to each of these typical settings. For children who can handle full, supported inclusion in a regular preschool classroom, there are ample opportunities to model behavior and speech on that of typically developing peers.

Supported integrated classrooms offer similar benefits, with a daily program and structure that's more geared toward the child with special needs.

Special classrooms and schools generally have the most services, but provide few opportunities to interact with nondisabled peers. Your child's needs, abilities, and difficulties will dictate the right placement, as there is no workable one-size-fits-all approach. Here are some families' experiences with Early Intervention--and one student's fond memories:

Early Intervention has been a positive experience. I feel these people truly care, and I have been approached for additional services rather than having to ask for services. --Shayna, mother of three-year-old Max (diagnosed multisystem developmental disorder)

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My son has had good Early Intervention services, which I feel is the key to his wonderful progress. He started school when he was three years old. It is a full-time program at a school for autistic children. It is a marvelous school, and it has benefited him enormously. They use the TEACCH program, and have a very good student-to-teacher ratio: about two students to one teacher. They have a very structured day.

If I had a magic wand, I would create schools for autistic children in every city, and the education would continue through high school. I dread putting him in the public school system--he learns so differently. --Sally, mother of four-year-old Dhylan (diagnosed PDD-NOS with autistic features)

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Max received very inappropriate center-based EI for a short period, upon which he started exhibiting self-injurious behavior [SIB] and was taken out. The SIB stopped right afterwards. Now he receives in-home, one-to-one Early Intervention and ABA services. The ABA is the most helpful of everything. He receives occupational therapy three times per week. This has effectively stopped feces smearing, and it helps with calming and balancing. Since movement gives him speech, it helps generally.

In-home EI is only as good as the provider. Mine is marginal, but certainly better than the criminal-type behavior at the EI center. --Holly, mother of three-year-old Max (diagnosed PDD-NOS)

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Danielle is in an integrated preschool; they are wonderful with her. She is inconsistent with everything, so finding the right teaching style is difficult, though. Still, she seems really content and happy with her life. --Lesley, mother of three-year-old Danielle (diagnosed PDD-NOS)

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I liked the teachers and my friend Linneus at Rice School [site of his supported integrated Early Intervention preschool]. I learned my ABCs. I did the sand table and the water table. I loved the water table and I still do! I hated circle time, it was so boring. --Seven-year-old Ian (diagnosed PDD-NOS, Tourette syndrome, obsessive-compulsive disorder, ADHD)

The right placement will be indicated by the goals in your IFSP, and it can make a huge difference. Unfortunately, what many parents get from their school district is strictly an effort to fit their child into an existing program, with perhaps an offer to adapt the program slightly. Sometimes this approach works very well. Other times, it's absolutely inappropriate.

You may be told that only a few hours of preschool or a type of therapy are available to any child due to budget constraints, staff limitations, or other reasons. This information is incorrect. Legally, the only factor that should limit your child's access to services is her actual needs. If the EI program is having a hard time financially, it needs to find additional resources.

If a program is suggested that doesn't make sense to you given the goals and objectives in your child's IFSP, you can advocate for a better placement.

Jesse's "Early Intervention program" was putting him in preschool for two years. That was two half-days a week at first, then upgraded to four half-days a week. While his teacher and the aides were wonderful, I really felt that he needed more time and was not given it. This year looks to be the same, with the exception that he will now be in school five half-days a week. --Dorthy, mother of five-year-old Jesse (diagnosed PDD-NOS with autistic tendencies, ADHD)

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Although Joseph is now receiving a very good program, it took over nine months of fighting to get it, and now Early Intervention is almost over. The providers didn't seem to know what to do with my son because he didn't fit any of their preconceived categories. They also did not want to provide anywhere near the level of intensity that he needed. For example, speech therapy was only provided after we filed for a due process hearing. On a more positive note, he has gone from single words to three- to four-word communicative sentences in just over three months of therapy. But I do wonder how much more he would be talking if he had nine months of intensive therapy behind him instead of only three. --Jennifer, mother of three-year-old Joseph (diagnosis in progress, possible PDD-NOS)

Intensive intervention is the key to helping children with autistic spectrum disorders reach their full potential. What the EI program won't offer, you'll have to do on your own, while advocating at the same time for a more appropriate level of public services. It's a tough balancing act.

Other educational settings for young children

A fourth type of setting, the diagnostic classroom, may be a joint project of the school system and a regional center or medical facility. These classrooms are used for long-term medical or psychiatric observation and evaluation of children whose behavior and abilities don't seem to fit the profile of any typical diagnosis. This is not a permanent placement, but if your child's case is especially unusual, she may stay in the diagnostic classroom for quite some time.

A very few young children with PDD-NOS or atypical PDD will be placed in a day treatment or residential setting. Day treatment centers are generally for children with very difficult behaviors (such as SIB or aggression toward other children), or coexisting psychiatric or medical problems, that make even a self-contained classroom inappropriate at this time. Good day treatment centers provide medical and psychiatric support, specially trained staff, a very secure environment, and intensive intervention. However, very few day treatment centers have experience working with young autistic spectrum children--most have until recently specialized in school-age children, and in the treatment of behavior disorders. At the end of the school day, children in day treatment go home to their families.

Residential schools offer educational programming and 24-hour care for the child. For obvious reasons, residential schools are rarely considered as a placement for a preschool child. The very few exceptions are children with very severe health or behavior problems whose parents are unable or unwilling to care for them at home, and those who cannot obtain services in any other setting--for example, an isolated family living in rural Alaska, where school-age children are generally either home-schooled or sent to boarding schools.

If the issue is the family itself rather than the family's location, as in cases of abuse, neglect, or abandonment, child services authorities will generally pursue a long-term placement in therapeutic foster care. These are homes where the foster parents have been trained to work with children who have special needs (in some states, a college degree in social work, psychiatry, special education, or a related discipline is required in addition to the foster care agency's own training program) and are willing to provide full-time, family-style care for these children. In some cases, parental rights will be terminated and the child will be placed for adoption.

Therapeutic foster homes are also an option for families who are simply unable to handle the stress of caring for a child with PDDs--for example, a teenage single parent, a parent with mental illness, mental retardation, or physical disability, a parent who is currently homeless or in recovery for substance abuse, or a family that already has many children or that already has one or more children with a serious disability. Most counties try to help these types of families with home-based services, but sometimes placement in a therapeutic foster home is a good option. In these cases, the foster parents and birth parents will work as a team to meet the child's personal and educational needs, with eventual family reunification as another goal. Permanent placement would generally not be part of the plan.

Monitoring progress in EI

Most IFSPs are fairly lengthy, with two or more pages of goals. That can make monitoring progress hard for parents and teachers alike. It's important to talk informally as often as you can, rather than waiting three months or longer for a formal review to take place. Your child may meet some goals quickly, and these sections should be revised right away. Other goals may seem impossible to reach. These goals may need to be broken up into even smaller steps, or the team may need to come up with different teaching methods.

Using a communications notebook or daily report form works well for many families. A communications notebook can be a spiral-bound notebook or notepad that goes to and from school every day with the child. Both teachers and parents can write notes in this notebook. For example, you might let the teacher know that Jennie slept poorly last night and ran a slight fever. The teacher might let you know that Jennie did very well in speech today, is working on naming colors, and had a normal temperature when the school nurse checked it at noon.

Both problems and successes should be written into the notebook. Too often, communications notebooks are used as gripe books, and parents get the inaccurate idea that their children are performing poorly overall instead of just in certain areas. Parents also may forget to let teachers know about successes at home that could have an impact on the classroom, such as the emergence of new words or skills.

All of your child's goals and objectives will be revised as needed at IFSP review meetings. These are held at least once during the school year. If you think one is needed sooner, you can call the team together yourself.

If your child is in a residential setting, you may need to designate someone else to be your compliance monitor. A caseworker from the local Early Intervention program's staff, or someone from the county's Child Services, Developmental Delay, or Mental Health department, may be able to take on this responsibility. Some parents have chosen to pay an independent advocate. Of course, you should still get regular reports by mail or telephone and attend meetings in person with the staff and your child whenever possible.