Empowering Families THE "STEP APPROACH MODEL" FOR EFFECTIVE ADVOCACy - Autism Ontario
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Empowering Families
The “Step Approach Model” for Effective Advocacy
by J. Dale Munro, MSW, RSW, FAAIDD, Individual, Couple and Family Therapist
Clinical Affiliate, The Redpath Centre, London, Ontario. dalemunro@rogers.com
In 1991, Dale Munro published “Canadians complain just as much as Americans, but not as well… Individually, we tend
an article in Canada’s Mental Health to be pushovers!” Phil Edmonston (2013)
entitled “Training Families in the
‘Step Approach Model’ for Effective Families of children, teens and adults with ASD (and related diagnoses)
Advocacy.” It received widespread sometimes lack the necessary skills and confidence to raise concerns comfortably and
attention and was republished in constructively with human service systems. Yet, families sometimes have more real
the newsletters of several Canadian political “clout” in affecting change in educational, developmental, social service and
organizations including Autism health systems than they realize at first (Schields, 1987). When families raise con-
Society of Ontario [now Autism cerns, they stand outside of existing systems. They have access to sources of influence
Ontario]. In the article which (e.g., mainstream and social media, top government or bureaucratic decision-makers,
follows, Dale has updated and self-help and advocacy groups) not ordinarily available to people employed by service
revised his original paper. organizations. This article argues that families of individuals with ASD can benefit
greatly from learning the “Step Approach Model” for effective advocacy.“Effective advocacy” can be defined down proverbal doors. factors such as professionals and manag-
as a non-violent empowerment and sup- ers being overworked or “burned-out;”
port process, through which families of Rule #2: Help professionals, so they that local politics and in-fighting can de-
people with ASD can constructively ex- can help you lay responses; and that there are always
press dissatisfaction and contribute to Families should keep a well-organized other families, individuals and disadvan-
creative solutions to problems existing file where all pertinent information re- taged groups in other fields simultane-
in human service systems. The intent garding their relative with ASD is kept. ously demanding service resources. By
of effective advocacy is twofold: first, to This is where professional assessments, developing a more accurate understand-
resolve concerns and meet the needs of school and agency reports, meeting min- ing of “the big picture,” family mem-
families and their relatives with ASD; utes, correspondence, service commit- bers can begin to determine their goals
and second, to open up communciation ments, a log of important phone calls realistically and start the all-important
channels so that raising concerns is per- and e-mails, and other information can task of answering key questions, such
ceived as beneficial by others in the help- be kept. Maintaining a proper “paper as: “What specific outcome do we really
ing process – e.g., individuals with ASD, trail” not only assists families, but can be want to achieve?” and “Who are the piv-
other families, professionals, education really helpful to new professionals or ser- otal people in the system, at this point in
and agency managers, bureaucrats and vices, when they become involved. One time, who can help solve our problems?”
politicians. creative parent, after watching the movie As Craig Schields (1987) so aptly stated:
Jerry Mcguire, began to use a “Help me “The system helps those [families] who
Ten Rules for Improving Advocacy help you” philosophy when dealing with know the system!” He further explained:
Effectiveness “Because the system continually
Why do some families get what they changes and the needs of your child
want when they advocate, while others One creative parent, after will change, getting to know the sys-
do not? Through the years, successful watching the movie Jerry tem can become a continuous task
family advocates have taught us the im- Mcguire, began to use a “Help for parents. Fortunately, it’s a bit
portance of adhering to the following me help you” philosophy like working a jig-saw puzzle; it gets
common sense rules. when dealing with new easier as you go along and as more of
professionals and services. the pieces fall in place.” (p. 56)
Rule #1: Never use a cannon where a
pea-shooter will do new professionals and services. She made Rule #4: Time your advocacy strate-
When family members are overly nega- multiple photocopies, or electronically gies carefully
tive, aggressive or obnoxious, they risk scanned each professional report or per- Family members sometimes fail to rec-
being avoided and labelled “sick,” and tinent document, so that every new pro- ognize that proper timing is essential in
often alienate other families, potential fessional or service that became involved order to have concerns heard and ad-
supporters and problem solvers. When was given a complete portfolio of infor- dressed promptly. To ensure proper
advocating, it is usually wise for family mation regarding her son at the very first timing, a family should ideally do three
members to speak in a calm, polite, dis- meeting (J. Wright, personal communi- things: first, raise concerns only when
passionate, but sincere and firm manner cation). This saved the professionals and their own motivation and energy level is
(Baskin & Fawcett, 2007; Edmonston, service representatives weeks of time, be- at its highest; second, complain and ad-
1984). Probably 90 percent of fam- cause they did not have to request, then vocate when the potential problem solver
ily concerns can be resolved quite sim- wait for past information to arrive. It al- is most willing and able to listen and deal
ply at or near the front-line (school or lowed the actual consultation, planning with the concern (e.g., when public opin-
agency) level. Coming on too strong, or intervention to begin sooner. ion is on the family’s side, or when new
too early with top managers or power- resources have just been announced);
ful outsiders (e.g., elected officials, law- Rule #3: Get the big picture third, identify needs early to avoid crises
yers, mainstream or social media) usually In order for the system to respond to later (e.g., begin post-secondary transi-
only complicates attempts to address particular needs, it is helpful for fam- tion planning when the student is 14
problems. Families need to understand ily members first to visualize the wider rather than age 18 or 21).
that advocacy is more about building context in which problems exist and what
relationships with key members of “the factors may be influencing the decision- Rule #5: Use the cards you’ve been
system,” rather than shouting, embar- making process. Families should be dealt
rassing decision makers and breaking aware that decisions can be affected by Too often, families fail to “use the cardsthey’ve been dealt” to turn their particu- even more potent instrument for affect- parents) far more powerful than moun-
lar situation to their advantage. For in- ing change can develop. Shared discon- tains of statistics. It is sometimes helpful
stance, most families of people with ASD tent, combined with opportunities for a for family members requesting some-
possess inherent cohesion, skills and little fun and fellowship, is the fuel that thing to take their relative with ASD
resources that can greatly facilitate the maintains cohesion in such grassroots with them when approaching decision
advocacy process. Some family members advocacy and support groups (Alinsky, makers – to drive home the reality of the
are excellent public speakers or motiva- 1971; Edmonston, 1984). family concerns. Other times, attaching
tors. Others have group facilitation or a video or using social media to illustrate
organizational skills; bookkeeping, le- Rule #7: Be willing to compromise! the challenges associated to one’s relative
gal, mediation, research, entrepreneur- Politics is the art of compromise, and can have a powerful impact.
ial or clinical backgrounds; “friends in families today must advocate in a very
high places;” or they possess personal- political world. Unfortunately, the word Rule #9: Practise good stress
ity strengths such as determination and compromise often carries with it implica- management
persistence (i.e., “I never accept ‘No’ for tions of weakness, vacillation, betrayal of Sometimes advocacy can be empower-
an answer!”), charisma and real commit- ideals or surrender of moral principles. ing, even exhilarating for families, as
ment to improving the lives of others. In Yet, Saul Alinisky in his classic book system hurdles are overcome. Other
really desperate situations, family mem- Rules for Radicals states that compromise times, advocacy’s adversarial nature may
bers can also call upon the public’s and be viewed by families as stressful, time-
media’s sense of natural compassion for consuming and demoralizing as they
Tremendous support can
for people facing serious challenges. And come up against “brick walls” (Nachshen
accrue from finding even
families should never forget that people & Jamieson, 2000). With this in mind,
one other family that
with ASD can sometimes take the lead, family members must carefully pace their
shares and understands
or work side-by-side with their families, advocacy efforts, to avoid physical or
your concerns (e.g., in
in the advocacy process. emotional exhaustion [“Remember, this
person or on Facebook).
is a marathon, not a sprint!”]. They may
Rule #6: Don’t go it alone even have to back off from advocacy for
In terms of effective family advocacy, is often a key and beautiful word in re- awhile when the frustration becomes too
“going it alone” is usually unproductive, solving concerns or addressing needs. intense, their personal or work life is suf-
exhausting or even destructive. There In the end, results – not revenge or fering, or other personal needs become
is strength, power and support in num- egotistical self-interest – should be the a priority (Baskin & Fawcett, 2007).
bers. For instance, if a parent is going to family’s overriding goal. Finding com- Family members need to ensure they
a meeting at the school, agency or pro- mon ground and negotiating a workable are practising good stress management
fessional’s office, it is wise to take part compromise can be a means of creating – e.g., regular physical exercise, proper
of your “support team” (a witness) with meaningful results for everyone con- nutrition and sleep; countering negative
you to take notes or as an extra set of ears cerned. In particularly intense disputes, self-talk by rehearsing positive self-state-
– e.g., one’s partner, friend or a trusted families or organizations may find it ments; setting aside time for meditation
professional (Baskin & Fawcett, 2006; useful to involve an impartial mediator or other mindfulness-based practice such
Edmonston, 2013). Whenever possible, who can help open up communication as yoga; going for counselling if needed;
families should work closely with estab- and encourage brainstorming of creative and sustaining healthy relationships with
lished groups, such as Autism Ontario, solutions for resolving complex family- one’s partner, a co-parent, the individual
professional organizations and agencies – system disputes (Munro, 1997). with ASD and his or her siblings, and
and influential community members – in other supportive people.
trying to secure what they need. Equally Rule #8: Humanize the concern
important, parents, siblings and people In order for family members to be suc- Rule #10: Express appreciation and
with ASD in one family need to coordi- cessful advocates, they should try to show support to helpful problem
nate their power and inherent skills with humanize the presentation of their con- solvers
those in other families. Tremendous cerns in such a way that decision mak- Sometimes family members who have
support can accrue from finding even ers feel the uniqueness, the validity and had their concerns successfully ad-
one other family that shares and under- the urgency of the request. An elected dressed fail to thank or otherwise sup-
stands your concerns (e.g., in person or representative may find moving personal port helpful professionals, managers and
on Facebook). If more families join in, an testimony from a parent (or a group of decision makers. This ultimately can beFigure 1: The “Step Approach Model” for Effective Family Advocacy*
(90% OF PROBLEMS RESOLVED AT THIS LEVEL)
Step 1: Try to define clearly your advocacy objectives (i.e., specify desired outcomes or
concerns to be corrected). Except in real emergency situations (which are rare),
“PEA SHOOTER” take sufficient time to “cool down,” reflect for awhile and do some “cognitive
restructuring.” This will help you to gain necessary perspective and further clarify
what you really want to gain by advocating.
Step 2: Develop a simple advocacy strategy. This involves using “behavioural rehearsal” to
practice what to say and how to act when raising concerns. It also means identify-
ing pivotal people in the system who may be in a position to really address your
ASSERTIVE
concerns. As a rule of thumb, always raise concerns with front-line staff or immedi-
ate managers first, rather than automatically approaching senior officials.
Step 3: Implement strategy developed in Step 2.
Step 4: If your concerns are not resolved satisfactorily by Step 3, go further up the bureau-
cratic and political ladders to try to get results from a pivotal decision maker at a
higher level. You may decide to have a face-to-face interview with the potential
“POP GUN”
problem solver, or opt for sending a registered letter listing the issues you want
addressed (possibly attaching a picture or video of your child).
Step 5: Continue to mobilize support for your “cause.” Create a blog or website. Start
an online petition. Develop a support circle, Facebook or advocacy group of like-
minded people who share your concerns, or request Wraparound (VanDenBerg
et al., 2003). Enlist the backing of influential, supportive or knowledgeable people
(e.g., clergy, friends, community professionals or other relatives) and reach out to
local elected representatives.
USE EXTREME CAUTION!
Step 6: If your concerns are still not addressed or a workable compromise has not been
reached, suggest involvement of a mediator, or continue going up the bureaucratic
and political ladders (e.g., contact government and political leaders, provincial om-
budsman or file complaint with the Human Rights Commission).
“CANNON”
Step 7: Pursue legal options, bearing in mind the expenses involved (e.g., send a lawyer’s
GROWING ASSERTIVENESS
letter, have lawyer attend meetings; lobby to get legislation created or amended;
sue an organization/key official, join a class action, use test cases, complain to pro-
fessional discipline committees, or file malpractice suits).
Step 8: Intensify use of mainstream/social media and public sympathy to support your
“cause” (e.g., print bumper stickers, write a book or satirical song, call open-line
radio programs, hold protest marches, picket offices of top officials, call a news
conference and invite reporters, publicly boycott a service provider).
LAST RESORT
Step 100: Use civil disobedience or other extreme but non-violent measures to highlight
concerns (e.g., sit-ins, fasts and hunger strikes, screaming and crying publicly to
emphasize your desperation, bombard mainstream and social media).
*”Never use a cannon where a pea-shooter will do!”self-defeating. Professionals, managers re-think (restructure) them in a more ra- families as the only avenue left to them.
and others from whom families request tional, positive and constructive manner. Some families have successfully used
help are human too, and do not like be- This technique allows family members to such methods in rare circumstances when
ing taken for granted. In the politically “cool down” and gain necessary perspec- all assertive options have been
charged world in which decision mak- tive before deciding on the most effective exhausted, or in “life and death” crises.
ers and professionals work, a little sin- course of action. But families must be cautioned that it is
cere appreciation (that might even make Behavioural rehearsal is another use- worth explor-ing all other options within
the problem solver look and feel good) ful technique. This involves the system- the system be-fore going outside it. In
goes a long way towards ensuring future atic use of role-playing to help family fact, the decision to “go over someone’s
cooperaton. members experiment with, rehearse and head,” or to apply any type of outside
consider various advocacy strategies be- pressure (political, legal or public) to
Learning to Advocate Assertively fore actually confronting real people the system is a seri-ous one. Families
Effective advocates are almost always as- and situations. Although family mem- should not rush into something they
sertive advocates. Unfortunately, many bers can use cognitive restructuring and may regret later. And it must be
family members confuse assertiveness behavioural rehearsal without drawing unequivocally stated that under no
with aggression (see Rule #1), or fluctu- on outside assistance, it is often help- circumstances can violent or highly il-
ate self-destructively among submissive, ful to enlist the counsel of others (e.g., legal approaches be justified – e.g.,
passive-aggressive and aggressive styles “level-headed” friends, support group physi-cally assaulting others or
of complaining. To clear up some of members or professional counsellors) destruction of property. (Alinsky,
these misunderstandings, assertiveness can when using these techniques. By using 1971; Edmonston, 1984; Schields,
be defined as the direct, honest, comfortable these two approaches, family advocates 1987)
and appropriate expression of feelings, opin- can usually change their perception of
ions and beliefs, through which one stands up “the enemy” (e.g., professionals, man- In Summary: The “Step Approach
for his/her own rights – without violating the agers, bureaucrats or politicians). They Model”
rights of others. can begin to reframe these people more Figure 1 (see page 30) illustrates the
In order to enhance their assertive positively as “potential problem solvers,” overall approach for effective family ad-
skills, family advocates often can benefit and to perceive difficult situations more vocacy – the “Step Approach Model.”
from systematic training in two useful optimistically. Using this advocacy model, families
techniques – “cognitive restructuring” are encouraged to use a graduated “baby
and “behavioural rehearsal.” Cognitive re- Extreme Caution! Going Well step” approach when raising concerns,
structuring allows family members to get Beyond Assertiveness starting with the least intrusive strate-
their anger, frustration and other poten- There may be a point in the advocacy gies and, if needed, slowly moving from
tially destructive emotions under control process where very confrontational assertive to possibly more aggressive ap-
and creatively channelled into socially approaches (e.g., public crying and proaches. If initial efforts do not work,
appropriate outlets. Family members screaming, social and mainstream me- families can consider (with caution) con-
are taught how to identify their nega- dia bombardment, civil disobedience in tinuing up the bureaucratic, legal and
tive thoughts or beliefs (cognitions) and the form of sit-ins) may be perceived by political ladders. In the end, family mem-
bers often are empowered by the knowl-
edge that they have had the courage and
References: commitment to “go to bat” for their
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