More parents of children diagnosed along the Autism continuum are seeking services. In California, the number of cases of autism nearly doubled over the past four years to more than twenty thousand. The cause is unknown, but clearly not related to population increase. The study that identified the increase was conducted by the California Department of Developmental Services. The researchers tracked the number of identified cases to twenty-one regional centers where autistic children and their parents receive government-funded services. The report showed that the caseload increased by 97 percent, from 10,360 in December 1998 to 20,337 four years later.

The most difficult choice for many parents is the option of residential school and treatment. Parents have learned that they are often alone as advocates for their children and are reluctant to transfer “parenting” roles to others who may be less informed about what their children need.

The complexity of needs of each individual child or adolescent requires careful consideration when choosing services. Education, cognitive and social assessment, clinical treatment such as individual, group, family counseling, social skills activities, pragmatic language programs and other related services need to be available. Each residential program must be suited to the individual child and his or her residential needs.

Consideration of the “whole child’s” needs and the family’s ability to meet those needs at home often results in a decision to seek a residential placement. As a precondition for starting the process of evaluation and review of the residential options, site visits are important. But decisions need to be made as part of a sequence of steps:

FIRST

Access consultation to determine a reliable diagnosis of your child and obtain recommendations about how to best meet the child’s needs.

A precise diagnosis and functional analysis of your child’s present behavior and psychiatric, neuropsychological, educational and medical needs are of critical importance. A comprehensive baseline of the child’s individual program needs is the foundation for decisions about residential program strengths and weaknesses in relation to what your child requires.

The purpose of residential, comprehensive services is to enhance appropriate levels of achievement and independence and by doing so compete with counter productive past behaviors.

SECOND

Allow yourself the “option” of a residential school – treatment placement. Decide to research residential programs with an open mind.

The correct choice of a residential school, if made by you alone or in conjunction with an educational consultant, will provide a complete and beneficial experience to the entire family. Most importantly it will provide a direction and the necessary supports to obtain future independence for your most important concern: the future well-being and independence of your child. Planning for a life post-high school must begin early and comprehensively.

The pressures associated with a child’s struggle in their current placement often obscure the cost implications of services. Financial responsibilities may create a new set of unintended or unexpected burdens. Professional financial guidance for the family is also an important component to help make a selection from among the available realistic education and treatment options.

A cautionary note is in order. Residential schools that are comprehensive are also costly. Parents should carefully consider the financial implications of assuming the costs personally, or sharing cost with an LEA, as part of a cost sharing agreement for placement. Residential care often provides impressive results that cannot be duplicated by less comprehensive services. Also, residential programs are often a long-term commitment.

THIRD

Research the options for help. This may include an ombudsman, professional educational and treatment consultant, or attorney specialist, and the resources for assistance available through your local education agency (LEA) and State Department of Education. Become informed of your child’s and family’s rights and protections under state and federal law.

Reliance on the local education agency (LEA) and on federal guidelines for identification of need and referral are critical issues. You must follow state and federal guidelines for special education eligibility for services, and obtain approval from your LEA for services to be provided. Funding and support for residential education and related services are dependent on specific criteria. If you do not follow the correct process you may forfeit your entitlement to LEA assistance and IDEA protection.

A knowledgeable advocate and/or attorney with an “education” placement specialty may be very helpful. An objective person to assist you may provide some barrier to the emotional stress and complexity of the placement process that can overwhelm parents.

FOURTH

Use the processes provided by the federal statutes and guidelines described by IDEA (Individuals with Disabilities Education Act) to include appropriate agencies in the decision process.

FIFTH

Research the specific residential school options that are suited to your child’s particular needs.

Initial questions to ask and evaluate when considering a residential placement are:

Who are the children and adolescent students served by the program?

What is the range of their diagnoses?

What are the levels of student intellectual functioning?

What teaching methods are used to provide instruction?

What related services are offered?

What are the qualifications of the staff?

Children learn as much, or more, from their environment and peers than from their classroom teacher and therapist. It is important to observe the residential school milieu, the routines, schedules, and levels of staff supervision during activities.

Careful consideration of your child’s peer group is needed to ensure an appropriate intellectual and social match. Also, certain clinical diagnoses do not fit with other children. Aggressiveness, “street-wise” behaviors, delinquency issues, conduct disorders, sexual aggression and exploitiveness are some of the major contraindicated peer-matches for the Asperger Syndrome child.

SIXTH

Identify a list of suggested school and treatment programs and prioritize your options.

Be an informed consumer of residential treatment and educational services. Program brochures and online web site information are only a start in evaluation of the program quality and appropriateness. The way in which the residential program environment is described often defines how staff will perform their roles. The way in which the residential living setting is described and staffed will influence the nature of interaction between staff and child and child and peers. If, for example, the child will reside in a dormitory of 20 with same sex peers of different ages, their interaction, supervision and staffing schedules will be different from smaller, co-ed settings.

The way in which the instructional setting and facilities and resources are made available to children and adolescents is also an important consideration.

Determine how large the classrooms are, how many students in each class, the student-teacher ratio, instructional approaches (is computer-assisted instruction available?). Keep in mind that smaller is generally better when evaluating classroom size and number of students in the class.

Effective programs can demonstrate the degree of cohesiveness between each part of the program. Cohesiveness means the sharing of goals and objectives by all staff, across all settings. When there is cohesiveness teachers, residential living staff, clinicians, medical staff and administrators will share philosophy, treatment aims, educational goals and independent living aims. Staff will be able to illustrate how practices relate to program and individual child goals.

Another very important consideration is how well the residential services provide preparation for independent living, community involvement and transition to work and additional education. The residential curriculum should illustrate pragmatic strategies for practical daily living skills. The curriculum should lead to evidence of self-regulation and behavioral repertoires that demonstrate increasing student independence and community involvement. The program should provide you a written description of the structure of the daily routines and activities, e.g.,clarity of objectives, resources, setting description, and student-staff ratio.

The effective residential program will require a “cohesive” approach to education and treatment. Education and treatment goals need to be shared by all staff in each part of the total program. Assessment of objectives is best considered across settings, e.g. in each classroom and other school and residential settings used by each student. Clinicians and related services staff need to be integrated into the systems of care and education in a “seamless” way. All staff require a schedule that allows frequent planning sessions. Staff are better able to support student gains when they share clear, precise objectives and strategies. It is preferred that all staff that are employees of the school retain a coherent, consistent approach to your child’s needs.

Medication management, psychological services are best provided in conjunction with observational data from each staff member providing services to the child. You may wish to see how data is collected and reported to children and parents. Certainly the more systematic are the collection of performance data of children, the better the decision making will be about what and when to change aspects of the program.

The collaboration between staff members requires that all staff be employees of the program. Independent consultants providing services may be an indication of “fractured” services and lack of coordination and consistency in service delivery.

Residential programs should be able to provide staffing schedules to illustrate level of staffing throughout a twenty-four hour, three hundred and sixty-five day period.

Ask to see staffing schedules that indicate levels of supervision during the course of a twenty-four hour day, procedure manuals, and schedules of staff training sessions.

It is important that the program can ensure adequate reliable twenty-four hour awake supervision is available to your child. Students need supervision during sleeping hours – not all children sleep during the schedule they require.

Also, establish that all staff have state and federal background checks, and that the program has a “staff drug and alcohol use” monitoring policy to ensure the absence of drugs and alcohol.

Other factors related to selecting a residential program require research and systematic investigation. Internet searches are informative and time saving. On-line descriptions of programs will provide basic information such as geographic location, costs, philosophy, staffing and students served by age and diagnosis. The program web site will outline admission criteria and the steps to follow in the admission process. Contact persons are usually identified at the web site.

SEVENTH

Visit the school without your child after records or information summaries are reviewed by school admissions staff.

Visit the program several times. Visit first without your child. And then, if you observe aspects of the program, speak to students, staff and other parents, then bring your child for an interview. If you include your child in school visits before you screen out inappropriate options the child may become confused and anxious by their perceived differences in program options.

The admission process should begin with a review of past education and treatment, past services provided, recommended services and performance histories. After the review, you should assess the program’s philosophy, offerings, and structure during a site visit without your child’s presence. If you are considering a co-ed program, be sure that male and female students are present in equal proportion. The age range needs to reflect both younger, same age, and older students in relation to your child’s age.

Same-sex program, all boy or all girl, have advantages and disadvantages. Are there options for same-sex or heterosexual classes? Consider both in relation to your child’s age.

Ask to speak with parents who have a child in the program who is about the same age as your child. Ask questions about their experiences and what they perceive program strengths and weaknesses to be.

Determine the openness of the campus to your visits and the criteria and conditions for your child to visit you at home. Ask if you are expected to follow program procedures during the child’s home visits.

Ask if the program is open to your visits, visits by your designees and what are the conditions placed on students in order for them to visit home. How frequently are parent visits permitted? How frequently does school staff contact parents to discuss progress and prepare for home visits? After you review the program, visit its classrooms, see its students, speak to staff and students then follow-up with a visit by your child for an interview.

EIGHTH

If the decision is to proceed with admission, bring your child for an interview and site visit after the parent visit is made.

Prepare your child for their visit to the school and the interview. A few days prior to your visit rehearse your child about what they will see and who they will meet.

The residential school option is often best presented by the child’s counselor, therapist or evaluator in collaboration with the family prior to the site visit. Educational consultants are of significant assistance to families in ways to discuss residential options as a family.

The age of the child will help determine the degree of choice and decision- making in the process the child will have. The child needs to know that he or she will participate in, but not control, the decision-making process of choosing a program.

Children are advised to prepare a list of questions they want to discuss, but only after they review written and website materials that describe the school to be visited.

Students often want to know about dress codes, discipline policy and procedure, roommates, home visit schedules, and other personal concerns. Help them articulate their concerns. Assist the child to formulate criteria for assessing a residential program that relates to their concerns.

It is helpful if the child visits classrooms, speaks with several staff and receives a “tour” by a student at the school.

The ways in which a child’s performance is assessed and reported to you is an important consideration. Read examples of progress reports and ask about the frequency of written reports to be sent to you.

A book I recently co-edited Asperger Syndrome: A Guide for Professionals and Families will provide more detail about types of services and optimal considerations.

Sufficient time to be able to see facilities and ask questions of school personnel are important in order to have the child form an impression of students, staff, and milieu.

It is often very helpful for your child to have an overnight stay for several days prior to finalizing the admission. An assessment based on the actual experience of your child may save a missed step and inappropriate placement. Visitation will be more reliable and authentic for the child if they actually walk through the program expectations rather than being “told” about them.

Assure the child that a visit is not the same as an admission into the program and that they will not be left at the school after their visit is complete.

The residential program director will be able to provide you with the licenses and certifications required by each state agency in order for the program to operate, e.g. State Board of Education and State Child Care Agency licenses appropriate to the program. You may check with licensing agencies to determine if there is a history of causes for action against the program.

The distance of the school from your home and state is less significant than the “fit” of the program to your child’s needs and family values.

If your research indicates, and you believe the school is a possible placement, then arrange for a brief stay for your child of three to seven days duration. The first thirty days usually provides important additional information about the experience you and your child will have over the long term.

A quality residential program will articulate all aspects of its program and where those program aspects will lead your child.

Residential programs, comprehensively designed, provide a great deal more than education of traditional academic skill. Preparation for a future life that includes additional post high school education, independent living, vocational preparation through career exploration and sufficient social awareness and skill to navigate a social life are the equally significant provisions.

ADDITIONAL POINTS TO CONSIDER

Your child’s program needs to be clearly planned al be it in outline form, at the time of admission. Clear steps need to be described that will increase your child’s achievement, self-reliance and independence.

Is a work ethic valued and supported? Are opportunities for authentic application of skills both academic, social and pre-vocational available to each student?

Residential programs will be able to provide staffing schedules to illustrate level of staffing throughout a twenty-four hour, three hundred and sixty-five day period.

The structure of the daily routines and activities e.g., clarity of objectives, resources, setting description, student-staff ratio should be able to be provided to you.

The ways in which child performance is assessed and reported to you is an important consideration. Read examples of progress reports and establish the frequency of written reports to be sent to you.

The pressures associated with a child’s struggle in their current placement often obscure the cost implications of services. Financial responsibilities may create a new set of unintended or unexpected burdens.

Professional financial guidance for the family is also a component of selecting from among realistic education and treatment options.