Transcript Supporting Families Through the Transition Years

Todd Harris, Ph.D.
Director
Devereux Pennsylvania’s Division of Autism Services
Devereux’s Center for Autism Research and
Education Services (CARES)
 Review issues related to familial stress
 Describe what we believe to be the role of
professionals with families going through the
transition process
 Review strategies for supporting families
 Research tells us that families with a child with an
autism spectrum disorder (ASD) experience much
higher stress levels than other families (including
those with Down’s Syndrome and other
developmental delays, chronic illnesses, and other
types of disabilities).
 Sources of stress include (but are not limited to):
Financial demands
Behavioral challenges
Decisions regarding treatment and placement
Issues related to siblings and extended family members
Co-morbid medical and psychiatric issues
Social isolation with other families
Frequent situations that are perceived as unpredictable
and uncontrollable
 Frustration and frequent contact with agencies and
service providers
 General fatigue
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 In addition to the stressors mentioned previously,
families may also experience additional sources of
stress during the transition years including:
 Puberty and related human sexuality issues
 Behavioral issues that sometimes intensify and are more
difficult to manage
 Greater social isolation with same-age peers
 Emergence of co-morbid conditions (such as anxiety
disorders and other psychiatric conditions, seizure
activity)
 Uncertainty about the future as their child with autism
enters adulthood:
 Where will he (or she) live?
 Where will he work? Will he be able to hold a job?
 Will he be able to go to college?
 Who will be his friends?
 How will we fund needed supports?
 Who will care for him when we are no longer around?
 How can we ensure that he has a high quality of life and is
happy?
 Research has illustrated that family stress can be
reduced by:
 The development of a comprehensive social support
system
 By receiving accurate information about services and
systems
 By acquiring skills that will enhance abilities to be
effective instructors and to manage behavioral
challenges
 By targeting meaningful skills for adulthood across
settings (including the community and employment
sites)
 By being knowledgeable about transition and adult
issues:
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Best practices for transition
Resources and funding streams
Post-21 program options in the area that you work
Related legal and financial issues
 By sharing your knowledge with families and
discussing these issues with families at least annually
once a child becomes 14 years old (or even earlier in
many cases)
 By organizing and routinely sharing resources with
families (literature, web sites, presentations, etc.)
 By assisting with action-oriented planning meetings
(person-centered futures planning)
 By teaching them to use interventions that work well
with their child to enhance their ability to:
 Generalize previously acquired skills
 Teach new skills that are specific to their home
environment
 Enhance their child’s successful inclusion into
community settings.
 Years 1 and 2: Enhance our transition program
through staff training and developing specific tools
including:
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Portfolios
Specific lesson plan summaries
Preference and skill assessment tools
Situational assessments
Person-centered futures planning
A handbook for families on transition issues
 Year 3: Partnering with Central Bucks School District
and Lancaster-Lebanon IU 13, we demonstrated that our
program could be replicated in regular education high
school settings
 Year 4: This past year was spent improving the
mechanisms for better supporting CARES families
with outreach across the region:
 Completion of a needs survey and knowledge
assessment
 Development of a web-based wiki based upon our family
handbook on transition issues A series of seminars for
families on transition issues
 Implementation of a structured parent education
curriculum
 Person-centered futures planning (PCFP) is
an ongoing process that brings together a
group of committed individuals to help an
individual with special needs plan and create
a life that is personally fulfilling and
productive
 This process can start at any time, but
should begin minimally at 14 years
 The initial PCFP meeting at CARES typically
takes two to three hours; subsequent annual
meetings usually last between one and two
hours
 We try to have this meeting about one
month before the IEP; we have found that
this process can help plan transitions IEPs
 Should the student attend the meeting?
 This depends on many variables, including
the students communication abilities
(receptive and expressive) and their comfort
level with sitting in a meeting
 Whenever appropriate, we encourage the
student to participate as much as possible
 Ultimately, this decision rests with the family
and the student
 If the student does not attend the meeting, it
is critical that participants are thoroughly
familiar with the student’s strengths,
interests, and likes and dislikes
 In addition to parents and the school team,
other attendees can include siblings,
extended family, friends, involved agency
personnel, and others that the family invites
 The following will be identified by the end of
the meeting:
 Important relationships that the student has
developed across settings
 Likes and dislikes related to social interactions,
recreation and leisure, employment settings,
community inclusion, sensory input, and
environmental variables
 Skills and supports needed for communication,
social skills, and behavior
 Meeting outcomes will also include:
 A description of medical and physical needs
 The student’s and family’s vision for post-21
living, employment, social interactions, and
community inclusion
 Goals and objectives for employment education
 An action plan for the upcoming year
 See our wiki for our format
 Who Responded
 209 families across the state (31 % had a child
between 14 and 17 years)
 15% had more than one child with an ASD
 40% of families had a child with autism; 30% had
a child with PPD-NOS; 15% had a child with
Asperger Syndrome
 45% had a child who was placed in their school
district; 28% were placed in a private school; 12%
in an IU classroom
 Areas of reported confidence
 Respondents were most confident in:
 Including their child into community settings
 Managing behavioral issues
 Effectively teaching new skills
 Respondents were least confident in:
 Identifying and planning employment options
 Identifying and planning housing options
 Identifying and planning adult program and college
options
 Topic areas that families were most
interested in learning more about (in
order of interest)
 Post-21 employment options
 Teaching social skills
 Options for housing
 Finding and securing the right funding
stream(s)
 Results from our knowledge assessment
 There were no real differences in
knowledge based upon the age of the
child with an ASD, child placement, or
geographic location
 Results from our knowledge assessment
 Areas that parent were most informed
included:
 Termination of wraparound services in the
post-21 years (77% correct)
 No IQ requirements with the autism
waiver (75% correct)
 Legally required action to maintain
guardianship at 18 years (66% correct)
 Results from our knowledge assessment
 Areas that parent were least informed
included:
 Typical duration of OVR services (32%
correct)
 Age eligibility for the PFDS waiver (36%
correct)
 Absence of entitled services in the post-21
years (39% correct)
 As our students became 10 years and older,
we quickly realized that critical information
on transition:
 Was not organized in one document, but rather
required searching many different sources
 Was not written in a manner that was easily
understood
 Based upon this finding, we created a Family
Handbook on Transition Issues and Services
 Within 3 months of publication, our handbook
was already out of date due to changes in
services and funding
 We to decided develop a web-based “wiki” on
transition service that can be updated as needed
 Let’s take a look at our transition wiki
http://autismhandbook.org
 Program Goals:
 To give families the necessary knowledge and
skills to be more effective instructors with
their child with an ASD
 To enhance the skills of our students across
home and community settings
 Program Components:
 Monthly Workshops and Meetings
 Monthly Assignments Related to Skill
Building
 Home Visits From Program Staff
 Review assignments
 Answer questions and concerns
 Observe teaching sessions and give structured
feedback
 Establishing behavioral
objectives and
measuring progress
 Arranging effective
 Teaching
communication skills
 Teaching social skills
lessons
 Using reinforcement
 Prompting strategies
 Planning and teaching
community skills
 Addressing unwanted
behaviors
 Performance Feedback Component
 Why is this component critical?
 Based upon the work of Aubrey Daniels and
others, staff were trained on how to deliver
feedback effectively emphasizing:
 Be positive (using the 3 to 1 praise to corrective
feedback ratio)
 Be immediate
 Use specific examples
 Let’s look at our performance feedback tool