| Step #7:
Start Behavior Modification Therapy |
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Overview
Well-structured, one-on-one home programs are one of the most
important aspects of your child's treatment. Studies have shown that if intensive
behavioral treatment is started between the ages of 2 and 3, children have a
50% chance of (dramatic) improvement. Having said this, early intervention is
key. Do not rely on traditional "special education programs offered by your
school district; they do not provide the type of therapy we're about to describe.
Parents may choose to fund such a program on their own, but are encouraged to
obtain funding from their local school district. See the section Funding.
Although a variety of behavioral and teaching techniques exist,
we recommend starting with the following and experimenting with others down
the road.
Applied Behavioral Analysis (ABA): ABA is one of the most popular rehabilitative
therapies. ABA programs introduce age- and ability-appropriate concepts in a
structured, one-on-one environment. ABA is a style of teaching that uses a series
of trials to produce an appropriate behavior or response. Selective "prompts
are used to assist and cue the child with new or difficult tasks being introduced.
ABA is also a data-based program that constantly monitors the progress of the
child; recorded data serves as a precise tool in evaluating the effectiveness
of the program. Conducted in the home, this program not only gives the parents
control, but provides valuable exposure and involvement to the entire family.
See one of the following links for more information:
Autism
and Applied Behavioral Analysis
The
ABA Controversy
Staffing a Home Program
Resources permitting, staffing a home-based program is a relatively
simple task. Parents should, however, take their time and give careful consideration
to the qualifications of those being interviewed. Effective home-based programs
consist of a Consultant/Program Supervisor and one or more Therapists.
The role of the Consultant/Program Supervisor:
Initial assessment and recommendations
for amount of therapy (that is, hours per week).
Design, implementation, and supervision
of the program.
One-on-one therapy with the child.
Training and support of the therapists
and parents.
Regular evaluation of program data
and progress reports.
The role of the Therapists:
Perform the majority of the one-on-one
therapy with the child.
Although trained therapists (experienced in Behavior Modification
techniques) are an obvious preference, a qualified Consultant can train a willing
participate in a reasonable amount of time. Keep in mind that not everyone is
"cut out for this type of work. Trainees should minimally possess an abundance
of patience, personality, and enthusiasm. These skills are critical to the delivery
and effectiveness of Behavior Modification techniques.
Depending on your location, staffing a home-based program can be a real challenge.
Resources can be scarce, but skillful research will bear fruit. Here are a few
resources available on the Internet:
Association
for Behavioral Analysis
ABA Connections
Institute for ABA
ABA Educational
Resources
ABA Resources
for Recovery
Also try:
Local ABA Agencies (if any)
Local Special Education Agencies and
Organizations
Placing want ads in your local paper
NOTE: College students make ideal therapist trainees. Try posting
flyers or ads at local colleges. Click the following link for a sample flyer. The
Sample Flyer is a Word document and can be saved and modified for personal use:
(Click here for a Sample
Flyer)
Qualifications for Consultants and Therapists:
Selecting a qualified consultant is critical to the success of your program.
Experience, personality, and enthusiasm are the greatest assets of every effective
consultant. Take your time; don't settle for the first person you meet. Conduct
interviews with as many candidates as you can find. Criteria for therapists
should be similar.
(Consultants)
Formal education (degree) in Behavior
Modification, Special Education, or Psychology
Experience with design, implementation,
and supervision of ABA programming
Experience with developing and presenting
formal progress reports to school I.E.P. meetings
Professional presence and communication
skills
Personality and enthusiasm
(Therapists)
Experience performing as an ABA therapist
(preferred, but not require
Some form of education in Behavior
Modification, Special Education, or Psychology (preferred,
but
not required)
Good communication skills (required)
Personality and enthusiasm (required)
Funding: (also
known as "Parents vs. The School District)
First the good news: Every state in the U.S. entitles children to the funding
of special education services such as ABA. You read it right--even those already
enrolled in full-time regular or special education classes. The
IDEA (Individuals with Disabilities Act) is a U.S. Federal Education Law
that requires school districts to provide a free appropriate public education
to eligible children with disabilities. Simply stated, one-on-one Behavior Modification
Programs are recognized as the most effective rehabilitative therapy available
to children with autism. Unless your local school district can offer such a
service (in a one-on-one environment), you are entitled to the funding to conduct
such a program in your home. Additional state educational laws may also be applied,
but can vary from one state to the next. You are encouraged to follow the instructions
below and pursue the funding for your home-based programs.
Then the bad news: Obtaining the funding for home-based programs can be difficult.
The surprise to most parents is the source of resistance. Although federal and
state laws give you the green light, your local school district may be running
interference. Truth be known, school district representatives are known to mislead
and downright lie about your eligibility for funding. The reason? Plain old
politics (that is, protecting the funds of local school budgets). It's for this
reason that you need to do your homework and know your rights. Do not allow
your school district to convince you that their special education programs will
address all of your child's needs. Such programs are excellent companions, but
they are no substitute for well-structured, one-on-one programs in Behavioral
Modification.
Now the homework: The following steps require as few as 30
minutes to complete:
1) Review the following Federal Education Laws:
IDEA
(Individuals with Disabilities Act)
NCLB (No
Child Left Behind)
2) Call information or go online and obtain the phone number
of your State Board of Education.
3) Contact your State Board of Education. Ask to speak with
someone who deals with "special education needs. Explain that your child has
been diagnosed with autism and ask them to help you identify any and all state
education laws "that entitle children to a free and appropriate education that
suits their special needs. Make note of these laws and education codes; they
will strengthen your justification when combined with federal laws such as IDEA
and NCLB.
After you've done your homework, the next step is to contact
your school district and present your request at an "IEP Meeting, which is the
proper and required forum for such a request. An
IEP (Individualized Education Program) is a plan and process that addresses
the special education needs of a child. Simply contact your child's teacher
or principal and request an IEP Meeting. Submit a written request for any and
all of the services you seek at the meeting. Some of the more common services
requested by parents with autistic children include Behavioral Modification
(ABA, etc), Speech Therapy, and Occupational Therapy. (Make sure to include
your formal autism diagnosis when making a request for any special services.
Formal diagnosis should be used as the basis for your justification.) Your request
need only be a simple paragraph stating your intentions. Make sure to include
the number of hours and frequency for each service to be performed.
(Click
here for a Sample Request)
NOTE: Written communication is the only way to ensure
that your request is properly documented. Without it, you may have little to
stand on in the event of litigation.
The best way to start this process is to identify families
already receiving funding for special services in your area (if not in the same
school district). Learn the ropes from someone who's already been there. Many
parents find that such parent-allies serve as one of their best justifications
when negotiating their requests/demands with the school district. It's extremely
difficult for any school district to deny funding for special services when
another family in the same district is receiving them under the same or similar
circumstances.
If your request is met with resistance, you have two options:
put on your own "battle gear, or hire a legal representative to wear it for
you. Not everyone is comfortable with business negotiation, especially when
confrontation is likely. Keep in mind that many parents are successful at fighting
this battle on their own, but legal help is available to you if you don't want
to "get into the trenches. If the latter case is true for you, our suggestion
is to start with an advocate. Child advocates are probably the most cost-effective
way to settle this dispute. However, some cases require more fire power; if
such is the case with you, consider a licensed attorney, but licensed attorneys
should be your last resort. The following list of legal resources describes
the legal rights previously explained and provides legal counsel and representation.
Office of Clients
Rights Advocacy
The
Council of Parent Attorneys and Advocates
FindLaw
Special
Education Advocacy Resources
Reed Martin Advocacy
Strategies
NOTE: Please do not be discouraged if you encounter
resistance. Simply follow the steps described above and stand your ground. The
funds you seek are literally your own tax dollars. Every state has a budget
for special educational needs and your child is entitled to the money, by law.
