Summary Presentation on Including People Living with Disability in Research

Strategies for Including Adults with Developmental Disabilities in Research

Katherine McDonald & Dora Raymaker 

Purpose: discuss and devise strategies for the effective safe and respectful inclusion of adults with developmental disabilities in self-report research.

Framing Research

BEliefs, Values and Principles

There are questions like are all people involved in research, not having adequate representation and there fore information is flawed. Our knowledge is more inclusive and applicable if we include a diversity of people. These beliefs drive whose needs are addressed, what values are reflected, how to we frame and think about populations of people, is it deficit or assets based, how do we interact with people and research participants..this is how I develop relationships? We need to explore this and how we approach this will introduce an element of politics and our work is value laden. 

How does the disability rights movement, civil and human rights inform how we approach our research. An orientating framework is nothing about us without us. They should have direct involvement, how can we accommodate people living with disability so the can be involved. How do we make accommodations and make research accessible. We need to value self report data and that we involved as many different people living with disability. Proxy reporting has ethical flaws - may not represent the persons we want.

To use strengths based approach in reporting.

IN devising respectful research how can we promote benefits, not just from the research but for the individual. Does it provide new opportunities for the participants to grow, how do we make sure that people can contribute to science and that this is a valued role. Payment is not a benefit. Compensation is a good thing, its not a benefit. Promote indirect social benefits, that can give more benefit, how we disseminate and the influence on policy and that there is knowledge transfer. 

Respectful research: there have been previous concerns about involving people with disabilities in research and there have been consequences of being overly protective and the consequences are that our knowledge does not include them. What is needed is access and that exclusion is only appropriate when all avenues to facilitate inclusion have been exhausted. 

Interpersonal interactions, we need to develop personal relationships and clarify the type of relationship (nature and duration)

Show positive regards (treat adults as adults)

Display and earn trust

be honest, respectful, nice, friendly

Demonstrate patience

Encourage don't be pushy. How do we strike balance and allow them to say no

Discussion about the sustainability of research and benefits to people. Keep in touch by inviting participants to workshops or seminars, have a reunion, use social media to keep in touch if people have access to it.

Ethics, Recruitment, and Consent

We need to have our research approved by an external body. When we step back and think about the ethics of our work. What are the risks, benefits and protections, who defines them and how are they are decided? What we think is good for someone might not be what they think is good. Ethics committees will not always have knowledge of and familiarity with population.  We need to be interactive with ethics committees , we sometimes hold ourselves back, we need to advocate for our position, we need to be competent in what we know is right. 

How do we reach the full range of the population, what are the gatekeepers, issues how can we work with gatekeepers. What about incentives and compensation? Should we pay people who are experiencing poverty in case it is seen as coercive. Giving informed consent is a big issue, how to we make sure people come voluntarily?People need to not just be voluntary but they need to understand the information about the research and that people can explain it back. Consent forms need to be accessible, consent needs to be an ongoing process. We need to consider capacity for consent and the more risk the greater the capacity the person participating needs. We need to infuse self determination into these research processes. It works if guardian says yes and the person says no...then we respect the person...but if the person says yes and the guardian says no...that is not respected.

What do we do when we don't have the resources to do a fully accessible research project or evaluation..do you do a limited study with caveats rather than have no information? The risk is that the results are not always passed up the chain with the caveats and limitations open. What are the qualities and experience of the evaluator, are they appropriate. 

Data Collection: issues with self report measures.

Are we getting at constructs in a valid way and are we looking at valid constructs in the first place....what happens if the measures are not used in the manner intended and does it exclude people with particular characteristics. If we don't consider this we can get poor information. Most measures are not designed involving people living with disability or by people who do not have a sound knowledge of the experience of living with disability. 

There are often assumptions such as disability the same as poor health or automatically mean a person has low quality of life or somehow "bad".  Ableist assumptions play a role in measurement. What about where measure might assume inability where ability may exist.

Cultural assumptions  Lubben Social Network Scale... was assuming that having more social contacts means you have more social support...Quantity rather than quality. If the evaluator shares values and identify as the measure that is likely to be what comes through. Become aware;

mental models we carry and representations of reality, be more reflective in practice.

of ableism and how it occurs in everyday life

this cross culturally think of people with DD as from another culture and what constructs they might think of....disability rights

of physical and sensory (print size), cognitive (Language) and environmental

Have materials in alternative formats - 

Physical changes to the research setting

allow support staff access or remove them if their presence increases risk

modifying working, formatting or adding elements (pictures)

Computer assisted surveys and interviews

Consider universal design - but no one size fits all

some accommodations may conflict with another

Accommodations as a process of negotiation - build in flexibility

not sure ask? involve people living with disability

Reliability and Validity issues

small wording or formatting changes are unlikely to compromise constructs if you need to make more substantial changes you can pilot test and/or re-validate. If substantial modifications would compromise reliability then use another tool rather than proxy. 

Only change if not understandable

don't change the meeting

don't split up scales

don't change response format

Clarify or simplify language...you can hotlink definitions or illustrations for difficult concepts or for response options.

Have community engagement but don't be tokenistic...be honest about the level of engagement that you have...how do you share power and people involved in consultation are they representative of the community voice...select the kind if community engagement that best suits the project and can be sustained. Develop engagement guidelines, respect each other needs, use accessible language and ways of reviewing materials, enable people to review materials prior to meetings and maybe that is with a support person. Establish facilitation and formal decision making processes to ensure everyone is involved....ie 1 is its great, 2 its okay, 3 I can live with it, 4 I don't like it, 5 over my dead body and this needs more explanation. Provide sensory objects during meetings and reimburse for transportation and continuous check ins and adjustments at end of meeting...what did you like that we should do next time. Continuous making an effort to make sure people are part of the group in the best way for them to be part of the group. Accommodate everyone's needs is ongoing, check your ego at the door, treat everyone as your close friends, there cannot be a tone of being rushed...academics are busy set  more relaxed tone..don't do it unless you have a commitment to community engagement it is time consuming.

Discussion - do you see a place for community engagement in your own work? what questions about implementing it?

Catching the Future..my summary of James Thompson from Illinois State Uni

We must Race to Catch the Future - James R Thompson. Illinois State UNiversity Department of Special Education. 

CHange is the only constant in our lives and our careers and those who do not embrace change will find themselves in a place of irrelevancy. COnferences like this raise our awareness of the challenges facing us and as we return home we will come across people and organisations so unwilling to change, why do people face new challenges with old solutions...its easier...cognitive dissonance and facing change is uncomfortable.  Adapting to new realities is hard and the immediate need to deal with being overwhelmed makes it hard to positive change which takes time and energy and the frontline. Positive change to race to the future needs to take a longer view than the crisis of the days. Thoughtful consideration about needs to be maintained and nurtured what needs to be changed and what needs to be discarded. Those of us who do not invest in reflections and consideration just perpetuate systems and services that maintain the status quo and the continued poor implementation of services and societies that meet needs and better solutions that cope with an ever changing context. We need to ask...thinking about the future is not to predict it but to raise peoples hope - Freeman Dyson.... there are too many people in need that our voices cannot be ignored we need to ensure society realises that we need to create opportunities for people living with disability to contribute as citizens in our society. Core values evolve as understanding evolves and so our values change as we gain a more enlightened understanding about the lives of people living with disability. 

aaidd has changed its values in 1903/4 it was about safety and happiness and by 1972 Perske talked about risk, dignity to learn and perhaps even be hurt to evolve into being a citizen. People living with disability are full fledged citizens with a right to a quality and full life...its about belonging to a community - well worth the risk....we need to keep reminding ourselves of the values that we advocate for to manage those who want to maintain the status quo. 

Tagxedo put text about your evolving values and your professional philosophy and see what happens...This is a note from Caroline

aaidd in 1913 had a meeting and the text was put into tagxedo and the key words were institution, state, mental, school, feeble, dr,.... no we put in Perske's address of 1972 and mental retardation while the language was not people first as the power of other words was evident...human, persons, attitude, normal, live, experiences, risks, relationships, dignity, allowed, worker and work.... the point is that the values underlying our work are different. What values underly our work today...what is the philosophy of our age and putting in the words published by past presidents on the aaidd website into tagxedo... these words were most used....community, work, lives, services, support, association, and people and persons were the biggest words and help us to understand the philosophy of our age. We need to catch the future by watching the language we use and that used by the media. Community services need to be updated and supported to expand to develop and provide for greater diversity.

Reading between the lines here is my summary...my point is that each of us must think about what we are about or we will drift....it is about transforming the context, the environment and how the person living with disability can and want to interact with their world. People living with disability want relationships with others, they want meaningful ways to spend their time, they want choices so their lives are unique and maybe disability specific and mainly generic services. They want to be empowered to have enviable lives as stated by Ann Turnbull. Focus professional efforts on supports that bridge the gap between a persons gifts and the demands on the activities and environments. The general population need to experience the richness that people living with disability can bring to their community.....

Are where there yet? We have worked on the journey but we have still not arrived....we should ask ourselves on a regular basis are we there yet? THere will aways be new ways and frontiers on the horizon...are we moving forward....are we racing to catch the future......

As we take our next steps we will take less wrong terms if we promote knowledge...that is peer reviewed and based on evidence,  it is likely to be better than relying on people's impressions. Scientific knowledge and research rigour and involves systematic empiricism is not without fault but can be more reliable than lots of hits on the internet....Dr Walter Fernald ...said people with a disability were a menace....In 1919 he reported that his life's work was discredited and he stopped his eugenics work and became an advocate for progressive movement and legislation around supporting people living with disability..he slandered people living with disability but in his research (600+) around people with ID discharged from an institution... he found that people living with disability were doing well and contributing to the community.

We need to catch the future through research....AJIDD and a new journal Inclusion and ejournal which is a journal that it is about being accessible to a wider audience. 

Catching the future through mentoring....sustainability requires an unbroken chain of competence. That will mean identifying people and encouraging them to develop their own reputations.  Robert Shalock....there is a joy that comes from mentoring...Val Bradley...A mentor is a trusted guide and helps us find our passion and achieve our goals.

Opposite of a mentor is a dementor that sucks the life soul from others...get too near a dementor it can feed on you long enough to reduce you to something like itself....aaidd  can help you connect to mentors and be mentored...aaidd expecto patronum!!!

Catching the future through engagement....embracing diversity....it is diversity of disciplines, roles and countries for those looking for an inter-professional home outside your work place. Lets you dominant cells you cannot express in your everyday work. Professionals that need regular opportunities for renewal. and to be reminded that our work is connected to more than our work and research. It is a place to work globally and linked to iassid. 

mnygreen@aaidd.org if you want to connect and contribute.

Carolines comment - great conference and joining aaidd as an international member was the best $50.00 I ever spent...access to online communities and journals and bookstore purchases....

Final comment

Dear past

Thanks for the lessons

Dear future

I am ready......

Race to Catch the Future aaidd Conference Opening

These are my reflection from the opening of the aaidd Conference 2013 Pittsburgh PA...great conference and more posts will be coming

Race to Catch the Future

Plenary Session Mike Wehmeyer Kansas University

A glance back: A history of our field

The past is prologue to the future and its important to study the past. How did our understanding and public perceptions of the past shaped the lives of people living with intellectual disability? The story of intellectual disability was understood in the dawn of civilisation in early societies, conceptualisations of disability were veiled in superstition and mystique and this continued into the medieval and middle ages the construct of intelligence was unknown as was prescientific medical concepts of cognition. All legal systems started to identify "natural fools" or "idiots" and this was identified by people who had difficulties with counting etc. The term idiot was someone who was different was identified in the late Middle Ages....around social and religious capacity. It referred to a differentness as the era emerged that this differentness and in the early modern era was associated with a lack of humanness. Somewhat linked to the concept of "changelings" in the late 16th century as idiotness and something short of fully human and this contributed to a movement towards identification. People identified as different and incompetent and thus began separation and this continued to the 19th century was coined by early enlightenists as the first efforts at rehabilitation in story of "Victor".  Victor did learn but this rehabilitation was considered a failure as Victor did not learn enough. Idiocy was not curable but could be remediated with systematic instruction. Specialisation around idiocy as separate from insanity. The first efforts were French and in 1848 started for the feeble minded in USA by Wilbur and more and more of these experimental schools were developed. In a spirit of positiveness. In June 1876 the founders of Wilbur, Brown and others the first meeting of the aaidd was founded. Pioneers in change in the experiences of people living with disability that had remained the same since the Middle Ages. Optimism was replaced by pessimism with an over burden system and society still had religious views about disability....in the late 1800s were institutions were again established....In  early 1900s institutions were again popular to separate PWD from the rest of society to protect society. This increased in 1940 60,000 to 160,000by 1950 and these facilities were not designed to have so many people residing in them. Pwd were considered morally and the eugenics movement and enforced sterilisation with 50,000 AMericans were forcibly sterilised. Black took pictures and developed Christmas in Purgatory...rows of iron beds and horrendous conditions...and there is a hell on earth at Xmas 1965.  Parents began to question the need to have the system we have....began to remove the stigma of being a parent of an individual living with intellectual disability. Kennedy administration also facilitated change and establishment of civil rights and start of a push for community inclusion and self advocacy. Establishment of different ways of thinking about disability and continued with work of Robert Schalock and others. The take home messages... in the words of Dickens ..it was the best of times and it was the worst of times....could be writing about the lives of people living with intellectual disability. People with great promise but experience lives of disappointment.  We continue to see juxtapose of situations a person with Down's syndrome gets an organ transplant but another company is sued for firing a person because the have a disability. If we continue to see people as different there will be discrimination. We have enough evidence of that. It is a civil lesson we should have learned by now. Separation does not bring about equal. The injustices are about the lack of our imagination, we know how to give people a quality life and we need to do it, have a commitment to it. We have always been wrong about what we expect people with intellectual disability to achieve, they achieve much more and we must accept that reality. The past is prologue means that as in a play is what is really past, is the first act and that there is more to come and that is the good news as we go forward. we have work to do and there is no time to waste.

The future...the technology we have to take us from where we are to where we need to be. Its not clear that people living with disability are as engaged with technology as the rest of us. How do we get to the table and contribute to what technology will look like in the future and how people living with disability will be involved.  Orchestra = make more money from front row seats and use technology to transmit sound. Technology can be useful but it can also separate.  Are people living with disability using three screens and a cloud, desk computer, laptop and cell phone. As long as I have a device and an internet connection I can do my work. Max's sandbox  - this goes on top of microsoft office...Animationish....gives ability to determine what you use that links to your ability. By building in flexibility into interfaces technology developers are trying to make difference ordinary. We are seeing imbedded supports and flexible means of interacting with technologies linked to universal design for learning.  This results in cognitive access to allow for more choice and greater independence. Are we helping people living with disability to understand technologies and what works for them. Smart technologies are allowing us to  be able to control our lives remotely.  Digitalisation replaces paper information and we expect things to talk to each other and its easier to track people. We are digitising daily life. Newton and Moocs are trying to personalise learning. 21st century gold rush its called algorithms and not many people living with disability involved so others decided what we are going to digitise. We are moving towards virtual companions such as virtual pets. Concluding statements recommend reading "Too Big Too Know" what happens when the smartest person in the room is the room; as well as the "The Future Bubble".

Disability public policy....Marty Ford from The Arc

Everybody is on their own, philosophy and privatisation as opposed to social responsibility.  What was possible in public policy in the past cannot happen now and making major change all at once is no longer possible. In recent years were are sidelined as only working for the status quo...we are improvement...we are having to work within congress we have...incremental change is all we have as even small changes cost billions of dollars. In the past we could work in a bipartisan way...not as easy as it used to be. Our goals were more clear cut in terms of policy in the 1980s it was about closing inst...new bills are about nuances to existing changes and they are more subtle its hard to rally the troops. Members of congress are not nearly ....ie defeat of the ratification of UN convention on rights of people with disabilities. We have lost great champions in congress and we are about to loose more. We have lost champions that are in congress and they do not fly the disability flag any more. In fact they are weakening existing programs. We need to work to find new champions. Organisations are getting together are developing shared public policy agendas and the divisions between groups are lessening to cultivate members of congress. I don't think we would get the 1990s Americans with disabilities Act through today. There were many acts passed...civil rights, vocational rehabilitation, supported employment, affordable care etc.. is complacency setting in with the fend for your self attitude of congress? Whats happening now is up in the air and everything is on the table; including possibility of more cuts and reductions in eligibility to medicaid, social security and supplemental security income. Although the American economy is improving and tax revenues are up, there is no certainty.  There are media attacks on programs such as medicaid and SSI so this is a serious threat to these programs. There are threats also to the Americans with disabilities act and the individuals with disabilities education Act. We also need changes to immigration laws to allow siblings living with disabilities to join family members in coming to live in USA. Keep your eye on the big picture, do not give in and we have achieved a lot and we can achieve more and we could lose a lot if we are not vigilant and continue to work together.  Attend events, we need to meet with politicians are regularly as you can, attend their events, make the encounters happen. Stay in touch with them even if they move portfolios and keep building bridges.  Mentor young colleagues in this old fashion "in person" approach. Social media is not enough. The grass roots at the local cities and towns is where it needs to happen.

Why a Reflections Blog

I decided to start a reflections blog to document and share my experiences and my travels in my quest to be a better educator and citizen around supporting equal access to a quality life for people living with disability. My journey really started in 1988 when I was working for the YMCA in Hackham trying to include disadvantaged young people in life through recreation and a manager from another centre suggested I seek additional work at Strathmont Centre.

Here the journey began in earnest from the moment I set foot on that ground I was instantly transformed by how much I liked the people living there despite how much I disliked the environment and everything about that system.

Sadly I have not documented my journey from that first day when I went to visit and saw a staff member serving mashed food from a box on a trolley onto plastic plates and passing it to people sitting at unset tables eagerly waiting to eat what smelt very unpleasant.....it ended 9 months later when I was successful at getting a position as a permanent full time Developmental Care Worker at Western Region IDSC.... I will add to this later.... but I am going to jump forward 25 years to now when I am the Head of the Disability and Community Inclusion Unit at Flinders University in South Australia but sitting at a final plenary session of the 2013 aaidd conference in Pittsburgh PA.