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Becoming an Effective Parent Advocate
by Gary Mayerson (parent of a child with an autism spectrum disorder)
For the parent of a child who has been newly diagnosed with a
significant disability, the world seems to have come to an end. In many
respects, it has. Many of the dreams and aspirations the parents had for
the child have been shattered overnight. In essence, a numbing pall has
been cast over the home no less than if a loved one had died. Under such
circumstances, it is easy for once optimistic and buoyant parents to
begin viewing the world with a sense of fear and to think of themselves
only in the role of hapless victim ("Why me? Why my child?, etc.") It is
only after the parent goes through the initial shock and grief of
learning the extent of the child's disability that the parent can even
think about becoming an effective advocate for the child.
Information is Ammunition
As is the case with meeting any threat, the more accurate and meaningful
information which is acquired by the parent, the more empowered the
parent is in dealing with the child's disability. A well informed parent
will be more effective in dealing with the school districts, schools,
and service providers which are in a position to promote or interfere
with the child's progress and human potential.
Perhaps the biggest surprise to parents of children newly diagnosed with
autism is that they often are not able to rely upon diagnosticians for
the most up to date information regarding the effective treatment of
autism spectrum disorders. Aside from peer review journals and
traditional sources of medical information, today's parent should look
to the Internet for parent support groups, newsletters, data bases, and
other valuable information. Search engines and web browsers such as
"Netscape" are an invaluable tool for this purpose.
Once the parent is "hooked into" the informational sources which are
available on the Internet, the parent will find that "cutting edge"
information is acquired almost at the moment the information first
becomes available. The Internet also is often the first place for
parents to hear about upcoming conferences and seminars. Considering
that online Internet access can be purchased for $19.95 per month, or
less, it is a very good investment which most parents will be able to
afford, provided they have access to a computer with a modem.
The social support aspect of the Internet also is extremely important,
as there are support groups on the Internet for virtually every
disability. Once an appropriate support group is located on the
Internet, the parent can "post" inquiries or concerns to the support
group's web-site. These inquiries are usually answered promptly by other
participating families. In this fashion, the parent often is put in
touch with other families who are similarly situated.
The Child's Statutory Entitlements
Even assuming that parents become "informed," it still is difficult for
many parents to understand that by federal statute, municipalities are
required to offer and provide a "free and appropriate public education"
(FAPE) to children with disabilities, consistent with the concept of
"least restrictive environment." Many parents simply "swallow" the
services which they are offered without question or objection.
Sometimes, this is because the parents are not aware that entirely
different services are indicated for their child's particular
disability. Parents sometimes do not confront the municipality because:
(a) The parent does not understand that their child is entitled to
(b) The parent believes that the municipality would (of course) always
act in the best interests of the child;
(c) The parent believes that the "experts" employed by the municipality
"must" know better than the parent "what is best for the child";
(d) The parent fears that if the municipality is confronted with any
parental discontent or objections, the municipality will retaliate
against the child by offering even less services;
(e) The parent believes that it is impossible for the common citizen to
"fight city hall";
(f) After dealing with a disabled child 24 hours a day, the parent has
no emotional energy left to fight for the child's rights;
(g) The parent has seen other families who have accepted less services
without making a fuss and feels "guilty" asking for more services;
(h) The parent fears that confronting the municipality will publicize
the child'sdisability and thus "stigmatize" the child; and
(i) The parent, unaware that attorneys will often take disability rights
cases on a "contingency" or modified contingency basis, erroneously
concludes that it will cost too much to retain a lawyer to secure the
child's statutory rights.
Galvanizing The Parent To Take Action And Be "Proactive"
Put the parent in contact with other parents who already have "gone
through" the same trauma.
Put the parent in contact with local support groups.
Put the parent in contact with therapy service providers.
Put the parent in touch with groups which offer "assistive technology."
Put the parent in contact with attorneys who specialize in disability
Encourage the parent to obtain respite services, etc. to maintain a
sense of normalcy and to "recharge."
The Importance of "Keeping A Record"
Unfortunately, if recent history is any guide, many municipalities and
early intervention providers try to quietly balance their budgets on the
backs of the children. Municipalities often will come up with any excuse
or pretext in an effort to justify limiting or denying altogether the
services which are necessary and appropriate for the child. A parent
ignorant of the child's needs and/or the child's statutory entitlements
(i.e., the non-savvy parent) is precisely the kind of person whom the
municipality will "target" to be offered the least services.
It is essential that the parent be counseled to maintain a detailed
notebook or "log," so that if a due process hearing ever is required,
the parent can easily reconstruct the facts as they actually occurred.
The same is true for any correspondence sent to or received from the
Gary Mayerson is an attorney and the parent of a child with an autism
spectrum disorder. He litigated the recent due process case, Mayerson
vs. the State of New York's Department of Health (4/3/97), in which the
Hearing Officer held that the 32-40 hours of one-on-one ABA therapy
requested by the petitioners was more appropriate than the 10 hours
offered by the respondent. The state of New York was ordered to
reimburse the Mayersons approximately $22,000 for expenses incurred in
providing their son with appropriate services.
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