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 demandsBehavioral challengesDecisions regarding treatment and placementIssues related to siblings and extended family

membersCo-morbid medical and psychiatric issuesSocial isolation with other familiesFrequent situations that are perceived as

unpredictable and uncontrollableFrustration and frequent contact with agencies

and service providersGeneral fatigue

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 issuesBehavioral issues that sometimes intensify and

are more difficult to manageGreater social isolation with same-age peersEmergence 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:Best practices for transitionResources and funding streamsPost-21 program options in the area that you

workRelated 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 skillsTeach new skills that are specific to their home

environmentEnhance their child’s successful inclusion into

community settings.

Years 1 and 2: Enhance our transition program through staff training and developing specific tools including:PortfoliosSpecific lesson plan summariesPreference and skill assessment toolsSituational assessmentsPerson-centered futures planningA 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 needsThe 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 Responded209 families across the state (31 % had

a child between 14 and 17 years)15% had more than one child with an

ASD40% 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 settingsManaging behavioral issuesEffectively teaching new skills

Respondents were least confident in:Identifying and planning employment optionsIdentifying and planning housing optionsIdentifying 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 optionsTeaching social skillsOptions for housingFinding 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 MeetingsMonthly Assignments Related to Skill

BuildingHome Visits From Program Staff

Review assignmentsAnswer questions and concernsObserve teaching sessions and give

structured feedback

Establishing behavioral objectives and measuring progress

Arranging effective lessons

Using reinforcement

Prompting strategies

Teaching communication skills

Teaching social skills

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 immediateUse specific examples

Let’s look at our performance feedback tool