IIDL Match Highlights from the SCLG Learning Exchange 1-3 April 2019

IIDL Match Highlights from the SCLG Learning Exchange 1-3 April 2019

Match Highlights from the SCLG Learning Exchange 1-3 April 2019

Members and Observer Countries from the IIDL Sponsoring Countries Leadership Group (SCLG) recently had the wonderful opportunity to sample short 3-hour sessions with five of the Leadership Exchanges that will be available to all IIDL participants in September 2019.

The depth and quality of the material and interaction was excellent and some brief notes have been prepared to give some additional guidance on what match participants might expect.

Our thanks to Dr Michael Kendrick for coordinating the program and to our generous match hosts who we were delighted to meet and share learning with.

We know that you will be in excellent hands at all matches so please sign up soon as the quality will be exceptional.

Lorna Sullivan

IIDL Coordinator


About the International Initiative for Disability Leadership (IIDL)

The International Initiative for Disability Leadership (IIDL) is a unique international collaborative that focuses on advancing thinking and improving systems and supports for disabled people. The focus of IIDL is on leadership development through the creation of networks and partnerships for rapid knowledge transfer about innovations and problem solving across countries and agencies.

IIDL promotes:

  • Full, meaningful and inclusive life opportunities for all people with disabilities:
  • Developing leaders who influence the conditions for positive life opportunities and social value for disabled people
  • Developing leaders who deliver the best possible outcomes for people who use disability support services and their families. 

2019 Leadership Exchange: ‘Leading the Way Forward – Access, Accountability and Action’

Washington DC, September 9th – 13th 2019

For the 2019 Exchange we have eleven disability specific matches providing unique experiences for interactive in-depth dialogue which fit within three sub-themes:

Access is about ensuring availability of high quality supports and services with a focus on people with lived experience of disability.

Accountability addresses systems and supports to ensure effectiveness and outcomes for people, families and communities.

Action speaks to engaging all partners in all sectors and across the lifespan, in enacting meaningful change in supporting healthy people in healthy and inclusive environments.


Only IIDL members can register for the 2019 Leadership Exchange.

IIDL membership is free for those in participating countries, and all leaders in disability are encouraged to join to keep up with international developments. You can become a member at Joining IIDL.

You can then register for this year’s Leadership Exchange. Registration is free for both the Leadership Matches and the Network Meeting. Please register online at 2019 Washington Leadership Exchange.

Browse the following highlights for a sneak peek at what you can look forward to from five of the available matches in 2019.

Understanding the Role, Contribution and Impacts of the US Protection and Advocacy System

Washington DC, USA

National Disability Rights Network – Curtis Decker, David Hutt and Ian Watlington


Match Description from IIDL website

The U.S. Protection and Advocacy (P&A) system has been instrumental in providing persons with disabilities, especially individuals with mental health and developmental disabilities, with legal advocacy services to ensure the protection of their rights, the ability to live in the community, access to critical health and supported services, and to hold systems and services for persons with disabilities accountable. The U.S. Congress established this unique system in 1975 and has expanded the system significantly ever since. The P&A system is comprised of nine programs funded by the U.S. government (see the NDRN PAACAP Network website). P&A programs are overseen by U.S. government agencies, but operated by an independent P&A entity located in every U.S. state, territory, and for a consortium of Native American tribes. Collectively the system is the largest provider of legal services to persons with disabilities in the U.S., covering a range of issues including access to services within the community, protection against abuse and neglect, discrimination based on disability, and inaccessible locations and programs. The National Disability Rights Network (NDRN) is the membership association, and training and technical assistance provider for the P&A system. This match will discuss how NDRN and the P&As educate policy makers, report on abuse and neglect, and use various advocacy techniques to ensure the rights and protection of people with disabilities in the United States.

Key Points of Interest

“For every positive move we try to work for there are push backs. Protection and patronising is still very much alive” (Curtis Decker)


  • 1997 Congress passed a statute to start the program of protection and advocacy for people with disabilities, which gave full access under the law for disabled people.


  • Nine Federal programmes operated by NGO’s, who can get involved with a disabled person where ever they might be in the system.


  • Agencies enjoy incredible authority. Can pursue legal, administrative and other appropriate remedies.
  • Have legal standing and can bring a law suit irrespective of whether the client can bring the issue. Also monitor service facilities.

Priority setting:

  • Anyone with a disability can come to us to get legal assistance however there are always more issues needing to be addressed than the funding and capacity to address.
  • Have programmes in education, health, human services and social security.


  • Legal and non-legal interventions.
  • Litigation and its potential international application.

“Without advocacy and protection it is not possible to hold the system accountable to its own laws and legislation” (Curtis Decker)

Exploring Leadership Directions for Employment

Washington DC, USA

TASH, Inc and Washington State Institute on Employment – Ruthie Beckwith, Ruby Moore and Cesilee Coulson

Match Description from IIDL website

This leadership exchange will focus on evidenced based and promising practices in promoting employment for individuals with significant disabilities. Supported and customized employment have emerged as two key approaches for access to competitive integrated employment. Visitors will explore the intersection of policy and organizational development from the viewpoint of employment providers, employers, self-advocates, and government officials. Key concepts explored will include innovation around the use of technology, agency transformation, workforce development, and self-employment. Visitors will also be invited to share their respective experiences with regard to promoting economic equity and social inclusion. Desired outcomes from this exchange include greater understanding of the employment potential of all individuals with disabilities; the identification of best and emerging practices for promoting employment, and the identification of replicable strategies for addressing systemic and individual barriers.

Key Points of Interest

Policy Framework

The US is now working to an “Employment First Agenda”. Transition focus is critically important so that children can never leave school to nothing, or segregated environments. The Employment First Agenda along with The Able Act really has changed how people look at the potential loss of benefits based on income. Loss of benefit is the greatest fear of families in respect of work, this addresses this fear.

Implementation Framework

Employer engagement activities are essential foundations to build momentum for employment.


Washington State has 87% of disabled people in open competitive employment, only 91 people continue to be supported in sheltered employment.  Every young person leaving school must have a minimum of nine months in the employment service.  At the end of this time young people can go into a community inclusion service if they do not have work. This however is funded at 50% of the employment service. Most concerned about those children who are still in segregated education – this is the most significant indicator of long term dependency and lifelong segregation.

Government was investing millions of dollars a year keeping people away from employers.  However, the return on investment data is stunning. On March 2019, segregated employment will not be funded. Medicad has reinforced the policy shift by indicating now that non-employment, segregated services will not be funded.


Powerful stories are told to illustrate the personal impact of progress made.

Role of Social Role Valorisation

SRV changes the roles and formalities into relationships, culture and values. Lives change when you understand SRV. Model Coherency is the most powerful tool for establishing and maintaining the quality of supports and outcomes for people.

International Advances in Self Direction

Boston, Massachusetts, USA

Applied Self Direction and Human Services Research Institute: Bevin Croft and Casey De Luca

Match description from IIDL website

Self-direction, also known as personal budgets, self-management and self-directed care, is an approach to organizing services and supports in which a person controls an individual budget to purchase goods and/or services to reach goals developed in a person-centered plan. Self-determination and person-centeredness are integral to self-direction, and the approach represents an opportunity for health and social care systems to translate these values into action. Worldwide, well over a million people with long-term service and support needs are self-directing, including people with serious mental health conditions, intellectual and developmental disability, physical disability, and older adults. This match will explore similarities and differences in self-direction approaches across nations and populations, with an aim of enhancing participants’ understanding of best practice. We expect that participants will represent a range of stakeholder groups, including people with lived experience, government administrators, providers, and researchers.

Key Points of Interest

Key Elements of Self-Direction

Person centred, strength based plan, individual budget, and brokerage support.

What the Data Tells Us

Unmet needs are significantly reduced and there are much better quality of life outcomes for primary caregivers, including being able to return to work and have greater influence and roles within society.

Cost Benefit

Cost benefit impacts are not shown within the first 3-5 years, but outcomes are far better.

Systems and Structures Required for Self-Direction to Occur

Self-direction is not a trial, project or a programme but requires a complete shift in how things are done. It requires an agile procurement system, where flexibility and choice and control is essential.

The Necessary Pre Conditions for Successful Self-Direction

If you have a poor quality traditional system then self-direction is hugely challenging, as the cultural change is too difficult to achieve.  For self-direction to be successful there needs to be strong leadership and a clear understanding and explicitly defined key values and principles of self-direction consistent with the 5 foundational principles of self-determination.

For more information, visit the following websites: Human Services Research Institute and Applied Self-Direction.


Methods of Preparing the Next Wave of Leaders in Disability (Leadership Development)

Washington DC

American Psychological Society – Aaron Bishop 

Match description from IIDL website

The growth in the number and proportion of older adults is unprecedented in the history of the US and countries around the world such as Canada, England, Ireland, Australia and Japan. The massive change taking place with this demographic has been impacting multiple industries and will continue to do so as countries struggle to replace retirees with new talent. This begs the question – how have societies prepared, supported, and empowered new and emerging leaders of all ages to continue to promote positive changes in diverse settings and contexts while also ensuring that people from marginalized groups are included. The purpose of this learning exchange is to identify and exchange information and insights about effective leadership and examine the various Leadership training/programs that exist for advocates, parents, siblings, professionals (pre and post), and direct service professionals in the US (as well as internationally) including their histories, philosophies, methodologies, scope, source of funding, long-term impact and curricula.

Key points of interest

The following is an overview of eight key leadership programmes. 

Programme 1: Maternal and Child Health Leadership in Education in Neurodevelopmental Disabilities

This programme seeks to prepare people from a wide variety of professional disciplines to assume leadership roles.

Programme 2: ARC of the US. Provider based organisation

ARC is a Parent based advocacy group. They recognised they were losing membership and worked to development learning and development opportunities for people interested in doing this work.

Programme 3: National Leadership consortium on Developmental Disabilities

University of Delaware.  Has a public leadership development opportunity. The programme is designed for the specific needs of disability organisations.

Programme 4: Sibling Leadership Network

To promote a network of siblings who share the experience of disability to serve as advocates and change agents for themselves and their families.

Programme 5: Partners in Policy Making

Designed for parents of children with disabilities to become agents of long-term change, active partners with policy makers and to build a vision of what is possible in the lives of their sons and daughters.

Programme 6: Supporting Staff

Helps staff make a life in the community a priority for the people they support.

Programme 7: Self Advocacy Resource and Technical Assistance Centre

Designed to strengthen the self-advocacy movement.

Programme 8: Cultural Diversity and Cultural Linguistic Competence

Looking at organisations which are not doing a good job in reaching marginalised populations and making the changes required to adequately support these groups.

The session explored the history, structure and impacts of each of these leadership programs, for example retention of people in the sector and collaboration,

Exploring Progress with Supported Decision-Making

Washington DC, USA

Center for Public Representation and Quality Trust for Individuals with Disabilities – Dr Michael Kendrick and Morgan Whitlach

Match Description

Supported Decision-Making (SDM) has been gaining considerable prominence and interest from many quarters, both within the USA and internationally. Equally, the number and variety of people practicing SDM continues to grow, as has the number of prominent state, national, and international organizations who have recommended SDM as a less restrictive and beneficial alternative to guardianship. For this reason, the time has come for an IIDL leadership exchange focused on SDM. This leadership exchange will be an opportunity for state, national, and international leaders to share and discuss the various SDM resources and practices that have been developed around the world. As with all leadership exchanges, the focus will be not only on presenting on SDM itself, but on providing an opportunity for many leaders involved in SDM to personally meet, interact, and learn from each other.

Key Points of Interest


Defined in legal circles as an alternative to guardianship. In supported decision making the big issue is to bring back to people the rights they would lose under guardianship. It is the place you should start rather than guardianship.

What is Known

  • Guardianship is more entrenched for people with ID than any other group. When you are more self-determining you are better able to keep safe and build independence.
  • It is usually the environment around people that restricts their decision making capacity rather than the capacity of the person themselves.
  • 90% of people with ID are still under guardianship, with their voices not respected or listened to.
  • People with an ID, under guardianship are less likely to live in their own homes, less likely to make choices about their lives, more isolated with limited planning for life development.
  • There is a statistical link between guardianship and deprivation.
  • If there are tools and approaches available then people are less likely to resort to guardianship.

Legal Framework

We are seeing state courts (US) now recognise supported decision making, with the majority of states now having or in the process of having legislative support for supported decision making. Supported Decision Making is recognised as an accommodation under the Americans with Disabilities Act. The National Guardianship Association states that SDM should be considered before guardianship and incorporated as part of the guardianship process. The American Bar Association has develop a set of guides and tools to help lawyers identify and implement SDM. They urge legislature to amend their guardianship statutes to require SDM to be the first consideration before guardianship is applied for. There is now interest in limiting guardianship authority and scope of involvement, making guardianship the last resort.

Food for Thought

  • How formal do we have to get around SDM approaches? Should we have standardised SDM forms and process?
  • Should paid supporters be able to be supported decision makers – recognising that some people do not have any informal networks?
  • How do we safeguard against abuse, misuse or undue influences?

Click here for IIDL Match Highlights from the SCLG Learning Exchange 1-3 April 2019 – Word Version

Click here for IIDL Match Highlights from the SCLG Learning Exchange 1-3 April 2019 – PDF Version

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