The Autism Society Event and Education Recordings Archive

Families, particularly families with autistic children struggle with the practical necessity of finding appropriate, affordable, and quality after-school care for their disabled children. One family’s solution was to dove-tail the establishment of a community-based “home-away-from-home” after-school program which incorporates traditional one-on-one table time learning with diverse therapeutics (including music, art, dance, social skills and aquatic) to setting-up a home-health agency to supply the one-on-one therapists. The needs of neuro-typical siblings are also incorporated in this model by involving them as direct providers and as part of the changing solutions team. Background: All families, particularly single parent or families with both working parents, struggle with after-school care for their young children. This struggle is exceptionally challenging for families with disabled children. After-school program services for children with autism in Montgomery County, Maryland fall mainly into two categories. Autistic children who arrive home after school for services (if able to find) with variable quality of applied behavioral analysis (ABA) type of home program on the one hand, and on the other hand, services in relatively large organizations able to support a free-standing after-school program which is mainly geared towards community outings and activity-based. These larger programs are few and far between with waiting lists and distances too far for young children to travel after-school from their autism-designated day school.

For the Liang family with multiple children of moderate to severe disability, finding adequate (and caring) after-school program in a facility has not been possible. Maintaining an ABA home care program also has been a road of frustration and heartache. It is hard enough to find one caretaker who can competently run a home program for one disabled child. Finding and retaining reliable caretakers to staff multiple disabled children for part time after school became a continuous source of strain. Furthermore, as the parents sought to provide one-on-one care for the two younger disabled siblings in home programs, the older neuro-typical sibling expressed a sense of resentment at always feeling isolated. The family home being taken over by a parade of therapists did not provide a place where the sibling felt she could have her own space, bring friends over, or develop her own identity. After years of struggle, the Liang family resolved to find a solution which may entail thinking up and implementing a novel approach. In particular, the maternal parent decided to go for a significant overhaul in the usual model of doing after-school care for the disabled children of school age.

Objectives: • Create and implement a new model of after-school care delivery to children with autism: “home-away-from-home integrated therapeutics” community-based after-school program which will merge individualized intensive one-on-one table-time teaching to scheduled community outing therapeutics, especially aqua-therapy in a nearby public pool. • Hands on involvement of neuro-typical siblings in the daily operations of the afterschool program by establishing a supportive, nurturing, and like-minded personnel group who would work together to achieve the common goal of helping the needy children.

Steps/Methods: 1) Procure a space which is warm, cozy, non-institutional appearing, has a back-yard, is near a public aquatic facility, and of course, affordable. Tap a non-profit organization to invest in this type of community-based property and start a ministry for special needs children, especially autism. 2) Go through Family Day Care and Small-Center Day Care training and required child care classes to qualify as a provider. 3) Get the space inspected by Maryland Child Care Office and by the local Fire Station. 4) Obtain Montgomery County, Maryland day care provider license. 5) Start a home health agency to recruit, train, and hire worker to make possible an unprecedented one-on-one therapeutic integration services to the children at the community-based after-school program. Home health aids can also meet the needs of the children in the home setting on the weekends, days off from school, etc. They will provide respite, intensive individualized support services, and family training services outside of the after-school hours. 6) When possible, incorporate siblings of children to work in the after-school setting providing direct care to a number of different children. When possible, incorporate creative ideas to program development from the siblings, and involve the siblings in the implementation of such programs for the autistic siblings 7) Develop of fiscally-responsible plan to make sure all pieces come together to deliver the best “home-away-from home” after-school and “beyond” care experience.

Results: 1) A cozy home was purchased by a non-profit organization and gave birth to a special needs ministry. The first of the special needs ministry is JIT or Jena's Integrated Therapeutics Community-based After-school Program. This property is nearly a 2 acre physical size with the backyard already fenced in. It is across the street from the local community swimming pool. The facility is designed and decorated to give an atmosphere where children get dropped off from school to a “home-away-from-home”. 2 – 4) Necessary training, renovations to the property, inspections by all relevant parties as well as approvals by all relevant authorities took place next. A day care provider license was obtained. 5) A & R Comfort Care, LLC, a Home Health Agency was founded. Policies and procedures were established. Liability insurance, bond, and independent contractor agreements were drawn up. An application to the Maryland State Medicaid program (via the Autism Waiver Services) was sent and approved to first start respite care services. Currently the services have been approved and expanded to include respite care, intensive individualized support services, therapeutic integration, and family training. 6) Three siblings of special needs children are now active in volunteering and working as student assistants in the JIT program. They get to work with autistic children who are not their own sibling. Their ideas and creative solutions are incorporated into the evolving programs of our children in the program. 7) JIT now serves 8 children with 11 direct providers. Services are reimbursed by billing the Autism Waiver services (Medicaid) or direct-pay for after-school care from clients. A & R Comfort Care, LLC extends services outside of the after-school hours for a total of 12 children with 15 direct providers as hired independent contractors.

Discussion: Individual needs of the children are met with one-on-one provider arrangement. However, each autism child – provider pair is together in an environment of nurture, support, and community with other child-provider teams. Working parents, single parents, or even parents who want a quality program for their child, do not have to worry about who will receive their children off the bus everyday, or who will take the time to do the correct ABA therapy during table-time, or who will take them community outing. Children get directly dropped off from their respective schools by the special needs school bus after-school. They are met with a team of direct providers who tend to their physical as well as emotional needs after-school. Diverse therapeutics is incorporated into the after-school program. Art therapy, movement therapy, music and dance therapy, social skills therapy as well as aquatic exercise therapy (go to swimming pool) are rotated into a weekly schedule which integrates these various therapeutics with ABA and/or discrete trials table-time drilling of skills.

This small community-based start-up after-school program is growing and adjusting. The truly rewarding manifestations are in our autistic children. Little by little, step by step, each individual child is making progress. They are also surrounded by a community of other children and providers, reducing the sense of isolation and the constant feeling of being out of place. Our after-school program is truly a “home-away-from-home” integrated and collaborative therapeutic experience. The smile that shines (love of music and love of water are universal themes for children with autism), the hug that lingers, the high-five splash in the pool, the wiggle of the body to the music, the look of wonderment at the art project, and the jump that signals “I belong” are some of the examples of the testimony that we are making a difference in these children's (and their families) lives.

JIT also provides a place where the neuro-typical sibling can feel that they are also contributing. This is a “home-away-from-home' but not his/her home. This is a place where autism is the norm and there are comrades to discuss strategies and pointers in how to cope and deal with autistic children. This is a place where they see the growth in each of the children and know that they have been part of something really worthwhile. As they splash and jump together with their autistic charge in the pool, the smile that shines from the sibling's face is as rewarding to witness as the smiles in the little kids. The JIT program delivers a novel and successful approach for those of us struggling to find appropriate and loving after-school care for our autistic children and rewarding work for our older neuro-typical sibling children. Establishing these types of after-school programs throughout needy communities is one solution in practical living of families with autistic children.

Learning Objectives: