Lora Perry, MS, BCBA
I am aware of five children with autism who have died tragically in the last year: three died in fire, and two drowned after slipping out of the home unnoticed.
These tragedies touch us all deeply–not only because of the searing empathy we feel for these grieving families, but also because they remind us with chilling clarity of the vulnerability of each child with autism.
In addition to our abiding and nurturing love, children with autism require care, treatment and education. The absence of any one of these puts our children at high levels of risk. It is our job as parents and advocates to educate legislators, schools, funding authorities, service providers, gatekeepers and ourselves about the non-negotiable importance of a plan and resources to protect the whole child.
Care includes ensuring that the child is properly nourished. The child must have access to routine and targeted health and dental care delivered by professionals. The child must be bathed daily, benefit from adequate sleep, and be protected from the dangers of wandering, traffic, drowning, fire, exploitation, and other home and community hazards.
Treatment is calculated to maximize the child’s potential for a self sufficient and rewarding life. Treatment objectives therefore include daily living skills, communication, “learning to learn,” and interventions targeted to overcome interfering behaviors including incontinence, self injury, aggression and significant property damage.
Education is delivered to help a child achieve or make progress toward specific academic goals. In many cases the individualized educational plan for children with special needs includes treatment goals. However, under the Individuals with Disabilities Education Act (IDEA), public schools are not obligated to ensure that children maximize their potential in any domain; rather, schools must allocate sufficient resources in terms of method, frequency and intensity to document progress toward defined goals. Furthermore, and while we are quite fortunate to have this entitlement, IDEA’s mandate places a potential “cap” on the child that will have implications over a lifetime. Outcomes can be predictably less than optimum.
Consequently, to achieve outcome objectives important over the child’s lifetime, school services must be supplemented.
Increasingly, parents, educators, health care providers and legislators are looking for ways to more equitably distribute the responsibility for a full range of services calculated to help children with special needs achieve outcome objectives for more self sufficient lives. Such evolving models go by different names, among them “blended funding” or “wraparound services.”
Traditionally, services for children with special needs have funneled toward existing programs and resources. This sort of “predetermination of placement” is not even IDEA-compliant. IDEA requires that a Pupil Evaluation Team (PET) define specific academic goals and objectives for the child before proposing the method, frequency and intensity of services required to help the child achieve those objectives. “[T]he appropriate placement . . . cannot be determined until after decisions have been made about the child’s needs and the services that the public agency will provide to meet those needs. . . . Therefore, the IEP must be developed before placement. (Further, the child’s placement must be based, among other factors, on the child’s IEP).” 34 C.F.R. Part 300, Appendix A, 64 Fed. Reg. 12406, 12475 (March 12, 1999). However, this legally-mandated process is frequently disregarded for the sake of expediency, or because educators are insufficiently informed.
Wraparound models have the potential to raise the bar for our children academically, keep them safe, and steer them toward lives of self-sufficiency. According to Individualized Resource Planning (1995), “Wraparound is based on individualized, needs-driven planning and services. It is not a program or a type of service. It is a value base, and an unconditional commitment to create services on a “one kid at a time” basis to support normalized and inclusive options for youth with complex needs, and their families.”
These “normalized and inclusive options” can be defined by the wraparound team to ensure the safety of our children. For example, the team might decide safety can be achieved through increased staffing for the child in the home and community, supplemented by the purchase of security technology including fencing, door alarms and tracking devices. The requirement to utilize methods of treatment and education that are scientifically validated as effective based upon peer reviewed science can also be included in the wraparound, individualized service plan (ISP).
Of course, the best-planned and funded services for our children are of no use without the human resources necessary to implement them. At a time when unemployment flutters between 3 and 5%, this is a significant challenge that must be identified by the wraparound team and systematically overcome, “one kid at a time.”
By “human resources,” we don’t mean simply people who pass the “foggy mirror” test (translation: if they’re breathing, hire them.) The wraparound team needs to build strong foundations for our children that will protect their safety and nurture their independence throughout their lifetimes; therefore, wraparound teams must assume the responsibility of investing in the professional development of a work force which can use scientifically validated treatment, care and education methods, “one professional at a time.” This means including training costs in a wraparound budget, as well as wages sufficient to attract and retain already qualified staff and supervision.
With committed planning and coordination, we can support the whole child; and, perhaps, we can even recapture a certain stability of life that diminished or disappeared when the diagnosis of autism entered our lives.
Vandenberg, J., Donner, R., Grealish, M., Miles, P. Stieper, C., Franz, J., Brown, N., Lubrecht, J., Huff, B., Reed, C. (1995). Individualized resource planning: Wraparound training. Maine: Department of Mental Health and Mental Retardation Bureau of Children with Special Needs.