Quality of Life Indicators

Autism NOW webinar

August 28, 2012

Jennifer Repella, Autism Society VP Programs

Who is the Autism Society? Founded in 1965 by psychologist (& father) Dr. Bernard Rimland

Oldest and largest membership organization dedicated to people on the autism spectrum. The involvement of those living with autism continues to be critical in all aspects of our organization.

Comprised of 200,000+ members and supporters connected through 115 chapters across the United State and Puerto Rico.

The Autism Society is dedicated to increasing awareness about autism and the day-to-day issues faced by individuals with autism, their families and the professionals with whom they interact. We advocate for programs and services that people need TODAY.

Autism Society’s Guiding Principles Meaningful participation and self-determination in all aspects of

life for individuals on the autism spectrum.

Individual, parental and guardian choice to assure that people on the autism spectrum are treated with dignity and respect.

Systemic change via federal, state and local public policy that benefit of the autism community.

Honest broker of reliable information that is timely, frequent, relevant and professional.

Multi-disciplined approaches to autism research focused on the whole-body and whole life that improves quality of life.

Philosophy of Empowerment

The Autism Society’s growing membership base encompasses a broad, diverse group of parents, family members and professionals.

Recognizing and respecting the diverse range of opinions, needs and desires of this group, the Autism Society embraces an overall philosophy that chooses to empower individuals living with autism to make choices best suited to their needs.

Providing information and education to help in decision-making are more highly regarded at the Autism Society than is advocating for one particular theory or philosophy.

Autism Society Mission and Vision

“Nothing about us without us”

• …at the very foundation of our organization.

• Every initiative of the Autism Society is done with involvement of those who are living with autism: individuals with ASD, highly-qualified professionals and/or family members, friends or other care providers.

• Improving quality of life is an intrinsic part of the Autism Society’s operational philosophy.

• For more than 24 years, at least one member of the Autism Society’s national board of directors has been an individual with ASD (a best practice encouraged throughout our chapters).

• Our advisory panels include some of the most influential names in the autism community. Collectively, the knowledge and expertise of these individuals is used to guide and support our goals and activities.

• People with ASD and family members are also well represented on our committees and staff.

Our Mission & Measurable Outcomes

• “Improving the lives of all affected by autism.” It’s a worthy mission, but how do we measure our progress and actual impact?

• The desired outcome of all we do is that people on the autism spectrum and their families have the opportunity to enjoy a good quality of life. However, defining quality of life is subject to individual interpretation.

What’s Quality of Life Got to Do With It?

• Autism Society programs aim to provide impact TODAY and continue to improve quality of life throughout a persons whole life.

• Objectives are measured against quality of life indicators. We believe that “quality of life” means setting higher standards and expectations in identified areas to truly allow an individual to contribute and lead a productive and meaningful life.

Defining Indicators

• Members of the Autism Society’s Panel of Professional Advisors, Drs. Martha Herbert, Brenda Smith-Myles and Ted Carr (1947-2009) were the main inspiration for the "Quality of Life" indicators as part of the Autism Society’s Treatment Guided Research Initiative. Theses indicators have become the standards by which the Society’s programs are developed and evaluated.

The focus of Autism Society programs is to improve the quality of life for people on the autism spectrum and reflect the following nine desired outcomes :

1. School Inclusion

2. Friendship/Social Connection

3. Health and Wellbeing

4. Academic Success

5. Autonomy

6. Independent Living (to the maximum extent possible)

7. Independent Employment (to the maximum extent possible)

8. Subjective Wellbeing

9. Recreation/Leisure

9 Indicators of a Quality Life

Other Critical Components Many things, in addition to the 9 over-arching categories, contribute to a quality life. Planning must also address other areas that are important to the individual including: the ability to communicate (verbally or via other

accessible/effective methods), a strong and varied support network that

includes others who are invested in the well being of the individual,

access to reliable transportation, a reasonable expectation for safety

There Are Things We All Strive For Respect and dignity

Ability to take risks and learn from mistakes

Financial stability

Self identity & acceptance

Equal opportunities

Fulfillment achieved from a productive life

Autonomy and self-sufficiency

Pursuit of dreams

Higher Expectations & Benchmarks

We hope that these quality of life indicators will provide individuals receiving services and supports a roadmap from which they form their expectations and that service providers use them as benchmarks for measuring the quality of the services provided.

Setting Goals • The most important participant in the

planning process is the person for whom planning is focused.

• Planning must involve discussion around what that individual wants in their life, what are their interests, hopes and dreams.

• To ensure a person’s long-term goals are met, you really have to start by being sure you are setting the right goals.

Person Centered Planning

• Provides a person with the option to be actively involved in discussing and deciding the things that impact his or her life.

• Self-determination means that from the very beginning people are taught the skills required to be an equal participant in making their own life choices, setting personal goals and initiating a plan of action.

Critical Skills

As simple as it may seem, real self determination requires certain skills, including the ability to: • Communicate preferences • Make choices • Set achievable goals • Learn how to access resources • Identify and solve problems • Manage time • Self-advocate

Life Changes • All individuals move through significant life

changes. Their quality of life depends not only upon the foundation that is provided in childhood, but also on ongoing supports that are specific to the educational, medical, social, recreational, family and employment needs of the individual.

• What is important or even desired will also change throughout an individuals life.

Council on Quality and Leadership (CQL) • The Autism Society has been an active

member of the CQL Board of Directors since 1993 and strongly supports their vision of a world of dignity, opportunity and community for all people.

• In 1969 CQL developed the first set of national standards for residential services for people with developmental disabilities.

• Over the years CQL has broadened their constituency and stressed the importance of regulatory compliance and social indicators (data on how well programs and services are performing) in health, education and social services.

• In the early 1990s CQL began an effort to interview more than 9,000 individuals and obtain Personal Outcome Measures® that determine if an individual’s or family’s dreams are acknowledged or realized, and if services and supports are truly addressing a person’s quality of life.

Inspired By a Vision… • of a world of dignity, opportunity and

community for all people, CQL redefined quality as responsiveness to people rather than compliance to standards.

• In 1991 CQL published 21 Personal Outcomes Measures ®, items and issues that matter most to people that define quality from the individual’s perspective and organized into the following: my self, my world, and my dreams.

• www.thecouncil.org

Some CQL Quality Measures

• Family

• Health

• Respect

• Choice

• Friends

• Safety

• Money

• Community

• Work

• Intimacy

• Faith

• Home

Each of us has a personalized definition of what is important – this is called our personal priorities

A Ripple Effect CQL has determined that some personal outcome measures are the best predictors of achieving other outcome measures. Those are:

• People exercise rights

• People are treated fairly

• People choose where they work

• People interact with other members of the community

• People perform different social roles

• CARF (Commission on Accreditation of Rehabilitation Facilities ) is an independent, nonprofit organization focused on advancing the quality of services for the best possible outcomes.

• CARF provides accreditation services worldwide at the request of health and human service providers.

• CARF accreditation signals a service provider's commitment to continually improving services, encouraging feedback, and serving the community.

• www.carf.org

In Focus on Autism & Other Developmental Disabilities Robert Schalock reviewed 3 decades of papers on quality of life:

Core Domains of Quality of Life

Underlying Indicators

Self-Determination Autonomy, Choices, Decisions, Personal Control, Self-Direction, Personal Goals/Values

Social Inclusion Acceptance, Status, Supports, Work Environment, Community Activities, Roles, Volunteer Activities, Residential Environment

Material Well-Being Ownership, Financial Security, Food, Employment, Possessions, Socio-economic Status, Shelter

Personal Development Education, Skills, Fulfillment, Personal Competence, Purposeful Activity, Advancement

Emotional Well-Being Spirituality, Happiness, Safety, Freedom from Stress, Self-concept, Contentment

Interpersonal Relations Intimacy, Affection, Family, Interactions, Friendships, Support

Rights Privacy, Voting, Access, Due Process, Ownership, Civic Responsibility

Physical Well-Being Health, Nutrition, Recreation, Mobility, Health Care, Health Insurance, Leisure, Activities of Daily Living

A Few of the Autism Society’s Long-Term Strategic Goals

Promote a lifespan approach to autism with special emphasis on:

Define the best practices, approaches and obstacles to early identification so that proper diagnosis can occur by age 3.

Transition young adults leaving school systems prepared for employment, advanced education, and independent living.

Identify gaps in services and work with delivery systems so individuals with ASD can expect the same access and adequate response from social service agencies.

Refine our approach and define specific outcomes for each quality of life indicator. In other words, how do we know when independent living or subjective well-being has been achieved to the maximum extent possible?

“Step approach” to maximize quality of life

Developed by Lars Perner, Chair Autism Society’s Advisory Panel of People on the Spectrum

Step Approach cont.

The approach is based on some assumptions:

If a child on the spectrum has a positive and appropriate educational experience, he or she is more likely to receive the greatest possible opportunity to achieve success in performance of daily required living skills.

A positive and appropriate school inclusion experience will help the child achieve the greatest possible academic success. This, in turn, will, help enable him or her to transition from public or private high school with the skills, education and sufficient life experience to have the best prospects for success in adulthood.

Academic success paired with life skills knowledge and experience, best prepares the transitioning high school student to pursue appropriate opportunities. This may involve postsecondary education (e.g., traditional college or vocational programs). When appropriate and desired, additional education can provide skills and experience needed to enter the job market with the best prospects for securing a position that is appropriate for his/her skills, knowledge and experience.

Opportunities that continue to build skills and experience provide greater opportunities for advancement and facilitate increased income opportunities. For others, appropriate academic success in secondary school will facilitate opportunities for more direct entry into training and employment.

Once employment success—whether in terms of employment or post secondary education has been achieved, the individual will have greater financial resources to decide to live in an independent living environment suitable to his or her ability and wishes. For some, it will be full independence, for others it would involve supportive services that are provided to maximize individual independence.

When a person decides where he or she will live, he or she can seek out recreational and leisure activities in the community which will facilitate increased health and well being. Opportunities to form friendships and various social connections are available. (It should be noted that these can certainly occur regardless of the status of employment or where someone lives).

With financial stability, a person is well positioned to achieve maximized autonomy and subjective well being, or rather a general sense of happiness and satisfaction with life.

What Does a Quality Life Look Like? It is different for every person and changes

throughout our lives based on experience and other factors.

When considering quality of life, we must keep an open mind, some people may not value the same things we value.

We must also consider quality of life for others impacted, care-providers, parents, siblings, spouses, roommates, etc.

It’s Really About Basic Human Rights

• It is important that we keep the person’s choices the primary factor.

• For some, less support will equal more independence. For others, more support will equal more independence.

• Services and supports can be provided in a variety of ways so you should think outside the box.

Every one of us has a role to play

We must all strive to be connected, engaged,

supportive, and serve the greater autism community by being a resource, an advocate

and a spokesperson within our communities.

One of My Favorite Quotes

• "There is more dignity in one thousand mistakes than one easy answer. There is more hope in a wrong choice freely selected than the right one provided by someone else" --Ari Ne'eman, President and co-founder of the Autistic Self Advocacy Network www.autisticadvocacy.org

info@autism-society.org

www.autism-society.org

Join us on

Thank you for participating!

Continue the discussion through our FORUMS! You will receive an email shortly with a link to our discussion board. The PowerPoint and recording will also be provided in this email. Email Phuong

(pnguyen@autismnow.org ) if you experience any issues.

Website: www.autismnow.org

Information & Referral Call Center:

1-855-828-8476

Next Webinar: Tuesday, September 4, 2012, 2:00-3:00 PM, EDT

The Importance of Including Siblings in Family Future Planning