MI-LEND Video Resource: Paradigm Shifts in Developmental Disabilities (Week 1)

Summary

In the first didactic session of MI-LEND's series on developmental disabilities, Elizabeth Jenss presents a historical overview of paradigm shifts in the understanding and support for individuals with developmental disabilities. The session explores the evolution of models from institutionalization to community inclusion, emphasizing the transition from medical to developmental, and finally to community membership paradigms. The focus is on understanding developmental disabilities beyond mere categories, emphasizing functional definitions, and recognizing the potential of individuals through inclusive and community-based approaches.

Highlights

• Medical Model: Disabilities were seen as illnesses, resulting in institutionalization. 🚑
• Developmental Model emphasized skill acquisition in artificial settings. 🎓
• Community Membership Model encourages integration into society and values self-advocacy. 💬
• High unemployment rates for people with disabilities indicate ongoing systemic challenges. 📊
• Deinstitutionalization led to the creation of community-based programs and supports. 🏡
• Normalization and social role valorization are key to successful community integration. 🌆

Key Takeaways

• Developmental Disabilities are now understood through a functional lens, not strictly by categories. 🧠
• The medical model saw disabilities as deficits needing cures, leading to institutionalization. 🏥
• The shift towards the community membership model emphasizes inclusion, self-determination, and quality of life for all. 🌍
• Advocacy and legislative changes were pivotal in transitioning from institution to community-based care. 📜
• Person-centered planning and self-determination are crucial for empowering individuals. 🌟
• Inclusion is the current norm, aimed at eradicating the need for new paradigms. ✌️

Overview

The session kicks off by challenging old perceptions of developmental disabilities through a concise history of paradigms. These paradigms have moved from medical models that espoused large institutions as solutions to community membership models that focus on inclusion and self-determination. The session highlights how people with developmental disabilities were historically marginalized, often institutionalized out of sight, and consistently seen through a medicalized lens.

As time progressed, the developmental model emerged, emphasizing education and skill-building within structured, controlled environments. Despite these advancements, many individuals with developmental disabilities remained isolated from the broader community. This model, while a step forward, still failed in many ways to integrate individuals fully into society.

Today, the focus is on community membership, which embraces individuals' roles within their communities and respects their autonomy. Advocacy for this model has been supported by critical legislation and individualized planning approaches like person-centered planning. These strategies promote genuine inclusion, empowering individuals with disabilities to lead fulfilling, socially integrated lives.

Chapters

• 00:00 - 04:00: Introduction and Definition of Developmental Disabilities In this introductory chapter, the session begins with a focus on paradigms within developmental disabilities. The main speaker, Elizabeth, prepares to delve into various models and discuss how individuals with developmental disabilities have been described and supported over the years. The chapter sets the stage for an exploration of historical and contemporary perspectives in the field.
• 04:00 - 34:00: Historical Perspective: Medical Model The chapter titled 'Historical Perspective: Medical Model' kicks off with the definition of Developmental Disabilities. It cites its source as the Association on Community Living and links to the Administration on Intellectual and Developmental Disabilities. This body funds various programs, including the 'used and Len' programs, and operates under the mandate of the Developmental Disabilities Act. The current definition highlights...
• 34:00 - 66:00: Shift to Developmental and Community Models The chapter titled 'Shift to Developmental and Community Models' discusses a functional approach to defining disabilities. This method is not reliant on categorizing types of disabilities but instead uses a functional definition that considers combinations of mental and physical impairments. It emphasizes substantial functional limitations across specific areas. To meet the criteria under this model, individuals must exhibit impairments in three or more of the outlined areas, including self-care and others. This chapter highlights a shift away from traditional models, focusing on developmental and community-based perspectives in addressing disabilities.
• 66:00 - 108:00: Normalization and Ecological Perspectives The chapter discusses various aspects of personal development and independence, including language learning, mobility, and self-direction for independent living and economic self-sufficiency. It emphasizes setting age-appropriate expectations for independence, such as not expecting a child to live independently at a young age.
• 108:00 - 150:00: Community Membership Model and Self-Determination This chapter discusses the community membership model and the importance of self-determination, particularly in relation to providing a combination of services throughout an individual's lifespan. It emphasizes the need for early intervention and continuous assistance for children from birth to age nine. Even if children do not meet multiple criteria initially, the absence of services and support can lead to them meeting these criteria later in life, highlighting the importance of proactive support measures.
• 150:00 - 164:00: Conclusion and Q&A The chapter titled 'Conclusion and Q&A' discusses the historical categorization of disabilities for qualification for developmental disability services. Specific conditions such as epilepsy, intellectual disability, autism, and an unnamed fourth condition are mentioned. The chapter suggests that Elizabeth Jenss, an associate, will provide further insights into this issue.

MI-LEND Video Resource: Paradigm Shifts in Developmental Disabilities (Week 1) Transcription

• 00:00 - 00:30 okay hi everyone Welcome to our first didactic session um we're going to do uh mostly it's going to be elizabe presentation on paradigms in developmental disabilities and looking at the different models and the way that people have been um described and supported over the kind of the decades and the years so the first thing I wanted to do was uh talk about what the
• 00:30 - 01:00 definition of Developmental Disabilities is from uh the this this comes out of the um the association on community living which then has the administration on intellectual and developmental disabilities which funds the used and the Len programs and is is funded or was mandated through the Developmental Disabilities Act so you can see that that the current definition looks at uh
• 01:00 - 01:30 you know it it's a functional definition so it's not based on categories of disability so you have to meet kind of the definition through the functional definition of you know combination of mental and physical repair impairments or mental and physical impairments and it's um likely to be uh resolved in substantial functional limitations and you have to meet this in three or more of the following areas so these are the areas of uh that are looked at self-care
• 01:30 - 02:00 receptive and expressive language learning Mobility self-direction for independent living and economic self-sufficiency so some of these of course like economic self-sufficiency and capacity for Independent Living would be looked at you you know you're always with the eye of what's the age kind of what would be the expectations for a person of a certain age so you wouldn't expect them to be independent living at five years old um but the definition in the next page talks about oh I'm sorry it'll be the page after this but um it's an and
• 02:00 - 02:30 it also reflects the need for this combination of services over the lifespan um and other forms of assistance for children from birth through age nine what we look at is they have to they may not meet three or more of the criteria in those that were outlined above but without the services and supports they have a p high probability of meeting these criteria later in life so that's what um how we
• 02:30 - 03:00 look at it it used to be um and Elizabeth will talk a little more about this that we had certain categories of disability like I remember at one point it was you were found to have a developmental disability if he had epilepsy um an intellectual disability uh what was the other ones Elizabeth I can't remember now there a couple of autism and there was one more there were four one oh four I can't think of the fourth one but you would that's the only four that would qualify you for services as a child or an adult with developmental disabilities so Elizabeth jenss is our associate
• 03:00 - 03:30 director for Community Living programs and she is how long have you been here at DDI Elizabeth 22 years 22 years so um she has a lot of experience in running programs in the fields of family support emergency preparedness and a whole bunch of other things um so Elizabeth I'm gonna hand it over to you thanks Ann I appreciate that and good afternoon to everyone um we're very excited to bring you the first in our lecture series for the
• 03:30 - 04:00 myland and um we'll conclude around 700 p.m. as Michael stated earlier you'll be able to ask questions throughout the presentation um as a presenter though if I feel like we're starting to get maybe off um the learner objectives too far then what we'll do is save them till the very end or we'll do like a parking lot what we call in the training world where you'll write your questions down and then we can email each other if um we have to sign up at exactly 7 p.m. so the
• 04:00 - 04:30 learner objectives for this two-part lecture is the learner will Define the three paradigms of the field of Developmental Disabilities identify a key principle of each Paradigm Define one outcome of the ecological perspective in the intellectual and developmental disability field describe how the Paradigm impacts people with disabilities Define three goals of the community membership Paradigm so when we conclude the lecture tonight everybody on the uh webinar
• 04:30 - 05:00 should be able to um know those learner objectives I'm going to start with uh the medical model tonight and I know that in preparation of this uh many of you reviewed parallels in time um which is a wonderful comprehensive historical view of people with disabilities how they've been treated throughout history um in literature in art um obviously in society um and so in the interest of
• 05:00 - 05:30 time I know that you've completed that part of it I'm my lecture is going to pick up around the 1850s sometimes I'm going to drift a little before that but um this era is really the 1800s to the 1950s um was really what we call the Great era not great but it was the era of Institutions and large institutions so my lecture tonight will primarily focus on the medical model um the era of large institutions we're going to go
• 05:30 - 06:00 through the developmental model and then finally where we're at today which is the community membership model um and moving forward parallels in time I think is a a wonderfully comprehensive view of the historical perspective and you may recall um the warehousing of individuals in initially what we called arms houses or poor houses um these were really the very first institutions where people people who were abandoned by family
• 06:00 - 06:30 members um you know were were and isolated and ostracized and their families or in community were brought to um and and they were put in with criminals they were put in with um you know people with mental health disabilities so it was it was a very uh sad situation and from that model though kind of the institutional model uh Grew From that wealthy families in this era
• 06:30 - 07:00 would tend to keep their family members at home um and support them there you didn't see people with disabilities very often out in communities um they were often uh hidden away and and not participating in communities the exception being um you know families who had Farms or in rural situation where that person might have a little job um on the farm or or with the family um this was the time of warning out and
• 07:00 - 07:30 abandonment of people with intellectual and developmental disabilities um this was a term that I'm sure you saw parallels of time where if your community didn't want you anymore uh you would put maybe in a little cart or on the next uh wagon that came through town and you were shuffled on to the next community and and dumped off um and and been just left there to languish often times this BR brings us up to you know this became a huge societal problem obviously
• 07:30 - 08:00 um people were fearful of people with intellectual and developmental disabilities as they often are of people that they don't understand um dorotha dicks of course a historical um figure a great humanitarian um one of the early nurses um you know fought for legislation in 1848 um L she did not directly ly Congress because women didn't do that at that time but indirectly um the first law was passed for preserving land with
• 08:00 - 08:30 the intention of specifically being homes for people with disabilities now it was a a great concept at the time everyone thought that it was a humanitarian thing um to provide a safe environment for these individuals which you're going to learn tonight um throughout the course of the lecture how sometimes our well-intentioned um ideas um things change change uh society
• 08:30 - 09:00 change economics change and then things evolve in a way that are detrimental uh to the idea that we actually originally founded so I'm going to take you to um maybe more of one of the earli evidencebased practices that emerged dur this era um and it occurs in France a French boy is found living in the wood around 1790s um he's find by people in the community and brought in and a local
• 09:00 - 09:30 Physicians examine him um and determine he is not deaf but yet he does not speak uh he's institutionalized and he makes very little progress while he's in the community institution he remains uncommunicative um has behavior issues um and so on until one day Dr jard is jenard is making his rounds and he sees this young boy who was abandoned um by his family and names him Victor of Avon
• 09:30 - 10:00 and this boy lived between 1788 and 1828 dry worked on vocabulary and word recognition with Victor and he begins to progress and of course he's wealthy yes housekeepers um and he teaches them how to do this uh like early flash card method um to teach Victor some language um and really is the very first time
• 10:00 - 10:30 Victor does progress and um he learns some everyday living skills and he he does stay with the doctor and his housekeeper the rest of his life um but most importantly I think for tonight it we need to examine the idea that this initiates one of the very first evidence-based practices in the field uh that people can learn and it also kind of starts another concept that we don't that people
• 10:30 - 11:00 shouldn't be Warehouse um it kind of changes from this custodial care idea of just being cared for so that people can actually learn and progress throughout their life uh now around 1859 Dr Charles Darwin writes a book on the Origin of Species by means of natural selection and focuses on the theory of evolution through natural selection he later regretted using the term um he preferred
• 11:00 - 11:30 the term natural preservation um and he believed that Evolution occurred by a natural selection process um he was actually um um you know he was actually a doctor as well as a geologist and um his theory really had little or nothing to do with the whole phrase uh survival of the fittest um this came from a gentleman named Herbert Spencer and Spen Spencer's
• 11:30 - 12:00 belief that the social order was governed by survival of the fittest which was sort of his theory um and a departure from what was originally intended by Darwin is what actually stuck in society at the time so this popular belief in society emerges that you know only Superior specimens um or people without disabilities um or diseases um should evolve
• 12:00 - 12:30 and it made a disability something that was to be a negative in society and to be shunned disability was viewed as a weakness and a deficit and this is one of the factors that led to institutions and a hiding way of children and adults with disabilities this belief also Justified for sterilizations marriage restrictions and um know as I said earlier the warehousing of individuals with intellectual and developmental
• 12:30 - 13:00 disabilities of course this was also this was these are just various factors that were going on in this era of um Eugenics and um I was all a part of the medical model so the medical model was a an era where the belief was there was something wrong with the individual the disability was a sickness to be cured that it was a deficit and it was primarily treated as ID was primarily treated as an
• 13:00 - 13:30 illness um Physicians of this era and all the way into the 60s and early 70s told parents to put their children in institutions because of a lack of options um there this was an era before there were services available um you know the school of thought was you have no support system in place um you have other children you have a family um that needs to move forward from this and so
• 13:30 - 14:00 again it it was well intention intentioned and based primarily on the fact that um there were no supports in communities in this era and again I'm I'm not a physician and so I'm just going to touch very lightly on this and I know in future lectures some of our physicians will talk more about this um but pain management in this area did contribute to social isolation people had our long and things that required
• 14:00 - 14:30 them to go to facilities to receive treatment um if seizure and Pain Management um resulted in less educational and social opportunities because medications of that era that controlled epilepsy were things like pH barbital which really sedates um young children um and kind of allows them to sleep through some of the times when they would be experiencing developmental opportunity of course in the institutions as the populations grew
• 14:30 - 15:00 medications were given to keep people sedated and quiet and easier to manage around this time of the late 60s I'm sorry around the time of the late 60s we had about 200,000 people living in institutions our medical directors of the institution struggled with operating the facilities and doing the day-to-day management of the facility um
• 15:00 - 15:30 the populations were burgeoning and there was little time for nurturing little time for nurturing Independent Living skills education and social skill development for the residents um as there were less and less staff to care for more residents and as facilities aged and need to be needed to be cared for to see to make things worse it seemed to be a good idea to develop the colony plan which isolated uh people with disabilities by category um so if you were deaf you stayed in the
• 15:30 - 16:00 unit with all the deaf folks if you didn't speak you were in the unit with all the people who didn't speak now I didn't tell you this about myself but I'm a parent to a young man um who has intellectual and developmental disabilities and and for me personally this Colony plan frightened me the most because even today in our group homes that are well respected and are run by well Pro uh respected providers they still use a mini version of this Colony
• 16:00 - 16:30 plan and one of the reasons is economy of scales um it's cheaper and easier to just staff people who all serve a person with the type of disability and this concept so Antiquated goes all the way back to this medical model and of course I'm not going to get into all the problems here um we have a limited time tonight but obviously you can think this through that if no one talks on a unit who reports abuse or that they didn't get food um so you can see how problematic this was someone had a very
• 16:30 - 17:00 uh interesting idea at this time also why not start Farm colonies where people could participate in tasks and grow vegetables and and operate farms and this was an idea to move people with ID out of um the overcrowded institutions on these Farms so I'd like to show you at this moment I'd like to show you um one of
• 17:00 - 17:30 the very first little DVD Clips this is a little DVD on Willow Brook one of the uh large scale New York institutions it's about two minutes in [Music] length well I visited the state institutions for the mentally and I think particularly at willbrook that we have a situation that board is on the a snake p yet and that the children live in F that uh many of our
• 17:30 - 18:00 fellow citizens are suffering tremendously because lack of attention L lack of imagination lack of adequate Manpower there very little future for the children or for those who are in these institutions uh both need uh tremendous overhauling I'm not saying that those who are the attendants there are the ones that run the institution are at fall I think all of us are at fall and uh I think it's just uh it's long overdue that something be done about
• 18:00 - 18:30 [Music] it it's been more than six years since Robert Kennedy walked out of one of the wards here at Willowbrook and told newsman of the horror he'd seen inside he pleaded then for an overhaul of a system that allowed children to live in a snake pit but that was way back in 1965 and somehow we'd all forgotten I first heard of this big place with the
• 18:30 - 19:00 pretty sounding name because of a call I received from a member of the Willowbrook staff a Dr Michael Wilkins the doctor told me he'd just been fired because he'd been urging parents with children in one of the buildings building number six to organize so they could more effectively demand improved conditions for their children the doctor invited me to see the conditions he was talking about so unannounced and unexpected by the school administration we toured building number six the doctor had warned me that it would be bad it
• 19:00 - 19:30 was horrible there was one attendant for perhaps 50 severely and profoundly children and the children lying on the floor naked and smeared with their own feces they were making a pitiful sound a kind of mournful whale that it's impossible for me to forget this is what it looked like this is what it sounded like but how can I tell you about the way it smelled it smelled of Filth it smelled of disease and it smelled of death we've just seen seen something that's probably the most horrible thing
• 19:30 - 20:00 I've ever seen in my life is that typical of Ward life uh yes there are 5,300 patients at Willowbrook which is the largest Institution for the mentally in the world uh the ones that we saw were the most uh severely and profoundly there are thousands there like that uh not going to school sitting on the ward all day not being talked to by anyone
• 20:00 - 20:30 so um you can see that the exposure from the media um you know was beginning and and there were several other things that happened that brought to light the the um deplorable conditions that people were experiencing in the institution um of course there's many many wonderful Advocates um I could name but um Burton blat um is is one of the most recognized um he was a professor at Syracuse
• 20:30 - 21:00 University dean of Education um he wrote many scholarly papers on intellectual and developmental disabilities and one of his most famous books was co-authored by Fred Kaplan It's called Christmas in purgatory and the pictures you've seen throughout the presentation are from that from that book um look magazine found the book as well and was connected to him and they did an expose um which led millions of
• 21:00 - 21:30 Americans to see what what was going on um in the institutions and of course Heraldo Rivera and I say in my PowerPoint yes the same one it is um but starting his career out and he was hungry for um a good story and willing to take the risks uh to bring national attention to this and of course then there were the Kennedy the the entire family's influence um on the deinstitutionalization process um this is a quote from our
• 21:30 - 22:00 president Jan F Kennedy um and he of course was a family member he had a sister Rosemary who had an intellectual disability and he was uh driven um to begin a panel of experts around the area of what they called then I I don't like the you to use the word today mental retardation but in the correct historical uh con cept of this it was the president's panel on mental
• 22:00 - 22:30 retardation of course today we no longer use this word but that was the the correct word to use in that era um so the panel convenes in 1961 the report concludes in 1963 and it concluded a vast need for family support um programs that would support families with resfit uh resources um it identified training to professionals um and to families as
• 22:30 - 23:00 being important education and this is where we all kind of come in is the the need for interdisciplinary um student education pre-service um Master's level doctoral in the field uh as well and then of course more research in the field to advance evidence-based practices another interesting thing is there were people on the panel who were family members as well and there was a need finally identified to involve
• 23:00 - 23:30 people with disabilities and their family members in the entire process um and this is this was a very New Concept in in that time because of that report and because of that work um IDs were born um ecds of course uh which is what my land and of course the Michigan developmental disabilities Institute we a University Center in educational excellence in developmental disability um we came directly out of this uh report um and
• 23:30 - 24:00 then lobbying to Congress to put money behind supporting the development of University centers DD councils every state has a developmental disability councils this is another um this was another initiative funded through this this um committee the protection and advocacy system as well so with the systems in place we began the creation of a new paradigm and as in any time when there's a shift
• 24:00 - 24:30 right in thought or philosophies um there's several different kinds of things that have to come there's a Synergy that builds and and so there has to be systemic change there has to be policy change there has to be Advocates there has to be a belief by society that we need to make these changes and so that is what happened um as we began the new era um there was the idea that um you know there was abuse at
• 24:30 - 25:00 many institutions and it was recognized there were Grassroots efforts by family members um there were lawsuits against the institutions that families won there was negative publicity in the media and the people who came out of the institution um spoke up about the ATR atrocities that occurred there um due to the advocacy and the panel recommendations and many of the other things previous ly mentioned um
• 25:00 - 25:30 Congress and was lobbied to begin legislation that would support community services for people with disabilities the Community Mental Health Act was passed in 1963 that is the act that funded all Community Mental Health um services in our country and now in Michigan funds R PPS um and individuals with disabilities Education Act is passed of 1975 before this the was no mandated special
• 25:30 - 26:00 education for people young children with disabilities so this was like hugely important each district could decide whether they wanted to you know teach students with disabilities or not there were programs that had students with disabilities but there were many others so children languished in their homes um or were dependent on their families to teach them the rehab Act of 1973 specifically sections 501 and 505 um talked about there could no longer be discrimination um of federal employers
• 26:00 - 26:30 of people with disabilities so these this legislation and there were others but these are kind of the cornerstones LED to um communitybased um community- based opportunities for people um but there was some drawbacks to the developmental model okay it was very much built on the psychology of that era um which of course in the teaching of
• 26:30 - 27:00 that era which was around task analysis um and around the promotion of mastering daily living skills um so it was a little bit like when you teach a child but we were teaching adults in these things and there was a belief that you know you could achieve these steps like you could feed yourself and then you would start with you know maybe toilet training then feeding yourself dressing yourself and so on the problem was if you couldn't get to the next step maybe you had a physical difficult difficulty
• 27:00 - 27:30 or whatever um you couldn't you couldn't go on and so people stayed on the same skill for months and months um and I'll give you like an example so if you were working on dressing yourself and you couldn't raise a zipper and you didn't have the gross motor skills or fine mot I'm sorry fine motor skills to snap a snap you might practice that for weeks and months okay um and no maybe thought about putting El last waist pants on
• 27:30 - 28:00 somebody and letting them go off to community or whatever that might be um this is an era where learning was done in artificial environments day programs um schools people with intellectual disabilities research now supports that they learn best in the Real Environment where they're going to actually manipulate and replicate the scale professionals administered program all right social workers psychologists
• 28:00 - 28:30 Physicians um you know special Educators and they were in charge of the programs there was very little input by the actual children and adults who had disabilities this is the era of assessment treatment plans and goals um my career I started in this era and I can remember it's I'm sure many of you can who are listening sitting around a table and the psychologist was there maybe the psychiatrist um the social worker
• 28:30 - 29:00 possibly a nurse and we did the treatment plan for a year and the person with the disability wasn't even in the room so you can imagine a lot of the goals were things like Joe needs to lose 10 pounds Joe needs to quit cracking his knuckles Joe needs to stop smoking or Joe needs to stop swearing so they weren't goals that maybe as an individual you would want to put you know down for yourself as goals to help you yourself become more self-determined
• 29:00 - 29:30 um and to achieve things the idea though behind this behaviorism also was that new behaviors could be learned and that's a positive right and so of course the reward token system we see use um but as I said earlier skills were learned in isolations and didn't transfer to community um and so we had to rethink this and think about how people could come out of these
• 29:30 - 30:00 educational um you know opportunities and into real outcomes for themselves so it was attempt the the idea behind this and the way we're educating people was really an attempt to make people acceptable to mainstream Society um at the time and because remember people with disabilities were not widely seen um in our communities during the U medical era or the institution era and so people had grown up and never
• 30:00 - 30:30 seen people with intellectual developmental or physical disabilities so um the the concept that behind the behaviorism was to teach people skills to make them more acceptable to society um and less feared this is the year of large group homes again I remember I started one of my jobs in Texas right um 38 bed facility but we thought this was progress I now look back and I realize it was really a mini Institution um and so but this was how it was and
• 30:30 - 31:00 they were often on what we would call the other side of the tracks this is before legislation passed and neighborhoods could say I don't want this s home in my area go to their city councils and it wouldn't happen so again people were marginalized in the poor poor parts of town um and segregated and there was no special ed right until 1975 so people were kept in their homes so there lack of planning for this period paradig created problems
• 31:00 - 31:30 however often times when there are shifts in paradigms and a shift in societies thinking there isn't time to make a plan we do the best we can right but finally we begin to see the end of the institutional era um okay let's see here we're going to go to normalization the ecological Theory and inclusion this concept of
• 31:30 - 32:00 normalization um of all the concepts that could have been selected why is this one so important um it's it's very important of course it came from Wolf wolfensberger uh Professor Syracuse University um and the the entire theory was that people with ID um could become parts of communities um they could be taught the skills that were necessary to make them a part of a viable society and and an accepting
• 32:00 - 32:30 Community um if you've never been or worked in an institution um you may not realize that people learn institutionalized behaviors when they live in these types of environments they're not given choices they wear hand-me-downs that people donate to the institution it's not fashionable um they've learned skills that um might not be considered um you know up to society standards they haven't had the opportunities uh to
• 32:30 - 33:00 learn these skills and it's in an isolated environment and so wolfensberger's research was around you know how can we help people um you know become part of their community and this concept of normalization is what he coined and today this word is offensive to some people because some people with disabilities feel like it's why do we have to become normal our disability makes us unique and we don't don't need to normalize to a
• 33:00 - 33:30 standard which kind of led to the evolution of social role valorization maybe a little softer way of of of of terming normalization um and basically again teaching people how to be a part of society giving them opportunities to practice their new skills in real environments and what I'm going to do is um I'd like to show you another video clip that is kind of humorous um but I think that it
• 33:30 - 34:00 demonstrates um how people can teach someone who has a disability or anyone else for that matter a skill by practicing it and giving them an opportunity oh you're here sit in this put this on your brother's going to seduce you really you're not going to resist that at all it's nice to feel wanted JJ your date is here oh you look nice
• 34:00 - 34:30 thanks you look nice too a confident ah so she has to be right next to you yes stay character and you're watching the movie you had me at hello Claire is eating her olives I don't like olives CLA does eat the olives and CLA goes to the bathroom Pet Stop [Music] and
• 34:30 - 35:00 CLA CLA dude where were you I actually had to go okay movie's about over this is the time when Claire's going to give you that look what look the look that says Kenneth please take me to your hot tub and you know what to do when she gives you that look right you get the idea
• 35:00 - 35:30 we are go cofy what is [Music] that clear so smooth and that is how you do it people well done brilliant all then you can't get me to a field trip one [Music] time I know it it was I don't know that Dr wolfensberger might have exactly
• 35:30 - 36:00 approved of that but I thought it was kind of a a cute way of showing how um we can do normalization right people just need to learn those skills in the same way that you and I learned um how to go on our first date or what the cool kids were wearing or whatever that might be um so you know an Awakening was beginning um and and his book is called citizen advocacy I would encourage people to read it it's still a Cornerstone in the field um and really you know he and others were really
• 36:00 - 36:30 beginning to Pioneer this idea that um we needed to move away from specialized programs um examining questions like were programs and workshops translating to success for people what do people need to live in communities and really this is the time when the journey from client to community membership begins and people began to think about quality of life um around the same era maybe a little bit later in 79 we come across
• 36:30 - 37:00 Yuri Brun from Brenner's theory on the ecological perspective um and for many of you you already know so I'm not going to get into a lot of detail about this but of course it's the ecological perspective that looks at our life in layers um looks at we can do it's um an ex exercise in identifying um who's a part of our life um what are the systems impacting our life and how can we increase areas of our life to include um
• 37:00 - 37:30 other people or other systems so we can eradicate the barriers um that often times limit our potential ecological perspective of course huge in social work which is and in my background but also influenced psychology education um and was the kind of one of the advents that led to the psycho psychosocial therapy versus the psychopath pathological model um which of course Psycho Social therapy um a
• 37:30 - 38:00 more positive way of uh providing uh therapy whereas psychopathological approach looked at more of the deficits of a person um in issues um that were problematic so I just want to put a quick slide up here about the different systems and how you would map something like this um if you were going to use this uh some of us still use this to help people people with uh Developmental and intellectual disabilities increase
• 38:00 - 38:30 what we call our circle of support um which you're going to talk more about in the second lecture um tonight which is the community membership model basically you have the micro system that's the person um then you have the meso system those are the people you come directly in contact with you know daily or weekly these would be like your family members your friends maybe your teachers professors um you know and then the exosystem are the systems that impact
• 38:30 - 39:00 your life like wherever you go to university um or a phip that administrates your um support coordination or it could be your health care your hospital um your physician and then on the Outer Circle is of course um what we would call the macro system and this are the legislation and or policies that influence a person's life um and and it's sort of like a trickle down effect how does the policy affect you know the next like the phip how does
• 39:00 - 39:30 that affect your supports coordinator who then helps you build your person centered plan um so and we're gonna like I said we're going to talk a little bit more about in this second lecture but I think the important thing to remember about this the the mapping system is that it's a great way to identify um positive influences that are out there that you can access and it's also way to identify challenges and expand a circle um
• 39:30 - 40:00 research shows that the more people come uh in their lives the more people they come involved become involved in their lives more active they are in the various systems um it's shown that there's a they're happier um and they show better quality of life outcomes and if you think about that and I makes sense considering like people who are isolated obviously are restricted in their interactions um and you know that's how people become very
• 40:00 - 40:30 depressed um and isolated so quality of life it was decided that it should not be defined by professionals um it should be defined by the individual and there was a um keynote conference that was done in Sweden in 1970 um where a white paper came out that was written by people with intellectual and developmental disabilities many of the leaders of that time in the field were at this conference um it was one of the um
• 40:30 - 41:00 pivotal moments of an international movement that began um inclusion and began this idea of a community membership model uh here's some of the things The Advocates defined um as their desires they wanted to live independently this comes directly from that from that white paper we want to live independently we want to learn to cook and to budget our own money we don't want to be coddled we want more interesting jobs we demand the right to
• 41:00 - 41:30 marry and have children we want to be trained and educated for better work the message was clear people wanted to be free they wanted dignity and they wanted personal fulfillment and if that sounds familiar to you that's probably the same things that we all want as individuals as well the field began to take note and a holistic service system begins um reducing barriers to inclusion um wraparound services start um so that
• 41:30 - 42:00 people can access the system at one point and receive multiple um supports through that one um Port of Entry and then there was policy that supported the implementation of this process again as I mentioned earlier whenever a paradigm shift becomes um you know begins there has to be legislation behind it um to support that the changes and so here were some of the things that happened in that era at the beginning of this era
• 42:00 - 42:30 the Ada was passed the Americans with Disability Act in 1990 the Developmental Disabilities Act of 2000 which an talked about earlier because um not only does it talk about um some of the most important things um for usage and family support it also identifies the eligibility requirements um for people with disabilities the association of intellectual and developmental disabilities uh and National Institute of Health offic of special education Rehab
• 42:30 - 43:00 Services and Foundations began funding um exemplary programs and pilot projects through grants in this era um program designed Incorporated people with disabilities in every layer this was becoming more common and we do this here at our us said and we always compensate our families or individuals with disabilities as they should be for providing their expertise but of course this wasn't
• 43:00 - 43:30 always the case so this was something new to the community membership model some of the tenants of the community membership model are this this model doesn't allow for exclusion of anyone it's accepting of all people um any society that excludes one excludes all and diversity is beautiful and enriches our lives um Community can and will evolve naturally if not forced and maybe the the next Paradigm will not be needed and I'd like to pose this question why
• 43:30 - 44:00 do you think that would be possible why do you think people would believe that that we won't meet another Paradigm following the community membership model and I'm just going to pose that to all our participants and maybe what I can do is go to the uh the next clip which is Greta uh she's part of our my DDI possibilities series and Greta I chose her because Greta's lived in all of these three paradigms she's she's lived through the medical model she's lived through the developmental model and
• 44:00 - 44:30 she's living a full life in the community membership model so well if you folks want to you know think about questions or answer that question we're going to go ahead though and I'll entertain them after we do the um the video C I guess we get this from my mom she had always told us there is nothing in life that you can't do whatever you decide to do you know persevere and you will be successful at it I I think Greta internalized that growing up with her I
• 44:30 - 45:00 saw that it didn't limit her enthusiasm and it didn't limit her drive and desire to excel past what her physical limitations were my mom me when I was small to do as much as you can for yourself first time I met her was very shocked cuz luxa never told me her Greta is disabled so from what my conversation with uh Dr Joshua is she goes to work
• 45:00 - 45:30 and they travel together and uh Greta apparently is very funny and telling jokes so I did not know I guess what my perception of a disabled person is is somewhat uh incorrect Pro to later uh to be so I'm made today week I'm hoping a ma I take got the layup to put them put
• 45:30 - 46:00 all the layup together I F on the [Music] cop paper she's very independent a lot more independent than you would expect I had to learn to allow her to take care of things for herself even if she struggled with it she preferred to work it out she manages somehow she manages where we'd be sitting and feeling sorry for herself she just goes
• 46:00 - 46:30 about business as usual R is probably more personable and gregarious than I am you know she she loves being around people I don't think gret ever met a stranger she will come up to you and and say hi I'm Greta what's your name I I don't do that readily the patients just love having her here she knows people she talks to them I bring them into the examining rooms and she hears their voice and she calls out is that so and
• 46:30 - 47:00 so and you know she recognizes their voice and it just Thrills people you know so I have a hard time getting them back to see doctor because they always have to stop and talk to Greta first she speaks her mind a lot uh so that's why I'm fortunate because she's just being herself she's not she's not being someone else she's not you know hiding behind a facade what you see is what you get she's so optimistic she you I don't every time I see her she's happy this
• 47:00 - 47:30 doesn't seem to be any da days for her that's Greta we travel we've been several places we went to Costa Rica we've been to Jamaica Philadelphia several times is one of our favorite cities to go to we've visit friends uh in Texas I've been to New York and I love New York my beautiful you
• 47:30 - 48:00 night I love that the limiting factor for their frequent travel is is Dr Joshua herself not the Greta cuz Joshua has a very busy practice so she cannot just take off when she wants to I really believe in God my go right there let the we I'm able to do so much because the GU he know that I
• 48:00 - 48:30 did the knowledge oh God one advice I would give is is that uh don't hold anyone back and and don't um instill hopelessness um I would say that that um the greatest gift that you give someone is inspiration that that that they are able to surpass what we see physically
• 48:30 - 49:00 as their limitations because the the soul and the spirit inside of Greta is just T out to the to the to the power that that that she mustered to overcome her phys physical disability on a daily basis the relationship between two sisters and the support of Dr Alexa Joshua able to provide for Greta I think that's very important for Greta um to be a su successful and to live her life to the fullest she supported me when I was
• 49:00 - 49:30 going to school emotionally and would come home and when I thought about complaining I look at Greta and said well I can't complain she has to deal with you know cerebral posy every day and I'm complaining because I'm up all night studying she would look and and say don't worry you can get through it just keep going so so I think because I realized the difficulty she had and she realized the difficulty that I was having that sort of solidified the bond that was already there I one time I made made a comments that um to Dr Joshua I said well uh Greta is very lucky to have
• 49:30 - 50:00 you but Alexa said to me yeah I'm lucky to have her too what came to mind was a was a photograph that we have that she's standing behind me against the fence and I'm standing in front of her now if you didn't know that you would think that she was standing on her own but actually she was leaning on me and I was leaning back and so sort of supporting her from that point on that's that's the way our relationship has been supporting each [Music]
• 50:00 - 50:30 [Music] other we're at the second um part of the uh lecture tonight so we're going to talk about the community membership paradigm Paradigm we're in right now
• 50:30 - 51:00 um Elizabeth Elizabeth can I interrupt you one second we have a an answer to your question coming from romsey okay excellent um he says there may not be a need for another Paradigm Shift due to the focus on inclusion and flexibility of the community orientation in meeting people's needs and allowing them to pursue their desires and goals that is very well stated and that is the hope of all of us in the field
• 51:00 - 51:30 Advocates family members and individuals with disabilities that there will be an acceptance of people and there won't be a need for us to provide um any any further specialized Support Services people will get real jobs people will get trained people will set goals be self-determined um and Lead their lives much as most people want to do so thank you I don't know who answered that one but there was great Ramsey great
• 51:30 - 52:00 answer um we're gonna kind of go ahead and I I like this idea folks just if you feel comfortable put your pose your questions and Michael will um facilitate that interaction with me so um please feel free to do that so this is the community membership model it evolved after the medical model and the developmental model um as this the previous slid stated it began around the late 80s uh early 90s it really puts the emphasis on the
• 52:00 - 52:30 person and some of the concepts around that would be you know people dictating their needs and wants money following the person we're not quite there yet um but we're hoping to get there um people with disabilities driving their desires setting goals and we're going to talk about the person Center planning process which is how we get there how we we we set these goals and attain these goals it Embraces a high quality of life for
• 52:30 - 53:00 people not marginalized and poor housing um not taking low paying jobs um in custodial positions um but we want people to have a high quality of life whatever that that that is that they want for themselves this the view is in this model that people are not ill um that disability is to be embraced and promotes a quality of life and an acceptance of all of us um if you ever
• 53:00 - 53:30 get a chance to see a gentleman named Norman c um he's wonderful speaker and there wasn't time tonight to actually show one of his great um works that he has done it's it's called crdo for support and I'm going to send out Ann is going to be sending out um some links to some of these little clips that we're putting out but anyway Norman is a person with a disability a physical disability and um he said person in the audience asked him would you take away your disability if you
• 53:30 - 54:00 could um would you and he said he said no and that surprised me a little bit but he went on to explain he said you know this was many years ago he went on to explain that his disability makes him who he is he may not have gone on to his life's work um without his disability and if you ever get an opportunity to see Norm I I don't think he travels as much as he used to but there there's a lot of his stuff on the web um and it's it's very worthwhile um viewing well put
• 54:00 - 54:30 you know what we can put um Crudo for support maybe up and then uh with his name okay and saying we're gonna put Crudo for support up uh by Norman CP so Elizabeth I have I have another question for you uhuh what would it be M Michael asks what does Money Follows the person mean I have not heard this before that means that instead of Social Security sending um a check to someone and directly they get to um well
• 54:30 - 55:00 maybe that's not the best example okay the maybe the best example of this would be um someone utilizes uh Community Mental Health Services right and they have a budget and they're allowed to purchase so many hours of a direct care worker's time right now the way this model Works in our system is the community mental health system or the phps have the money and it goes into a budget for the individual with a disability the individual with the
• 55:00 - 55:30 disability doesn't get the check and so therefore they don't get to customize those Services exactly they want they want to because they have to be beholden to the way that system um you know does their financial um you know billing all of that that goes with it and so in an ideal model what many of us would like to see is money follow the person where where you know the person would get the funding and then be able to dictate exactly how they would get to use it
• 55:30 - 56:00 versus going through a system now there are other countries that actually do this um they tend to be countries where um there are not very many people who have disabilities but but we are working towards that hopefully that would be one of our evidence-based practices that we would want to see evolve from this model these are some of the other evidence-based practices of this model um teaching people with disabilities their advocacy skills so they can speak
• 56:00 - 56:30 out for themselves um those who can't or for families utilizing an advocate is a very helpful way of getting what you want um for an individual person- centered planning of course is a Cornerstone we're going to talk a lot more about that later in the lecture independent facilitation self- advocacy employment meaningful jobs that result in a a fair wage um and living in
• 56:30 - 57:00 inclusive communities remember how I said we started in the institutions and then we went to these large group homes and we're still in this group home era right now um and and So eventually wouldn't it be the goal to have people living in their own homes um with a roommate if they wanted to but to have the option to live the way we do and just more options so people can live individualized lives with which would lead to the quality of life set by their standard Advocates are just
• 57:00 - 57:30 absolutely essential to people with disabilities getting what it is they need um because if you don't know how to ask for something yourself you need someone who can help you ask for it they're trained Advocates out there um there are many organizations that aren't necessarily disability specific that use Advocates as well for the same reason we do because it works a Social Security Administration has Advocate um but these are are some of the disability field agencies that have Advocates that people
• 57:30 - 58:00 with disabilities can call upon to help them um get some of the results that they're hoping to Michigan protection and advocacy Services Incorporated which is our sister organization in the disability field of Michigan uh United Cal poliy of Michigan um I actually need to take math off they do not employ Advocates but the arcs do many of the arcs have Advocates um in various count throughout Michigan Advocates can be pretty much
• 58:00 - 58:30 anyone a professional can be an advocate for someone um you know an individual with a disability becomes a self Advocate you're an advocate whenever you speak up for families or individuals that have disabilities and it's really important that if um you know people want to learn the efficacy skills we need to be a part of that because once right you teach a person to fish they can go out and get their own fish they're not Rel Ling on us to cast the net and so Advocates that's that's what
• 58:30 - 59:00 the important role is to make sure you Mentor or or um provide someone with some education around the ability to speak up for themselves and that's what self- advocacy is all about um the person represents themselves they are are usually learning to speak up in a cause that they believe in they are taking action they represent what you need or what they need to others they never give up they are you know persevere until
• 59:00 - 59:30 they get to a solution that's a part of being self-determined which we're also going to talk a little bit later about in the in this lecture so it's speaking up for yourself heal Advocates learn um their skills through training they go to conferences there's um a lot of curriculum online um that's available a lot of disability related organizations do advocacy training um and so and there's a lot of ways to access that and also there's a
• 59:30 - 60:00 slide in here about some of the um self- advocacy organizations that are very active right now these are some of our more popular uh self- advocacy organizations right now it's um save self- Advocates becoming empowered Sam South Advocates of Michigan um which I I believe is one of our newer group groups that's it's going to be um a very important self- advocacy Network in our
• 60:00 - 60:30 state the autistic self- advocacy Network um very important as well arcs have advocacies and self- advocacy education available and also utilize individuals with disabilities as advocates and also the Michigan protection and advocacy incorporated as well and some of these organizations uh feel very strongly like SA um feel very strongly about family members not calling themselves Advocates they
• 60:30 - 61:00 believe that only individuals with disabilities should call themselves Advocates and they're very I've been in rooms where there's been heated discussions around uh parents uh becoming advocates for their children um they really hold a philosophical belief that individuals with disabilities need to be empowered and self-determined um to become their own Advocates Michigan mental health code mandates person- centered planning person- centered planning is another evidence-based practice um that is there to support Community membership for people with
• 61:00 - 61:30 disabilities this is the way it's actually stated in the law it's a process I don't I I know that many of you listening know that it's like nails on a chalkboard when we hear that person cented plans are documents or it's a program okay it's a process it's a PR a process of planning and supporting the individual receiving services that builds upon the individual's capacity to engage in activi activities that promote community life and that honors the individual's preferences choices and
• 61:30 - 62:00 abilities the person's centered planning process involves families friends and professionals as the individual desires or requires it's only a paragraph but it's a very important paragraph in the law and a lot of people fought for many years to have it become part of the Michigan mental health code so some of the elements of good person centered planning means that the individual decides the outcome for the meeting they talk about who to invite into that
• 62:00 - 62:30 Circle what are they going to talk about they set goals and when where to hold the meeting they talk about you know who should facilitate the meeting um and there's a pre-planning process as well but I thought this would be a good place to bring in Michael small he's considered to be one of the fathers of person Center planning um one of the leaders and he's written books on the topic he's he's definitely considered um the person who's an expert in this area
• 62:30 - 63:00 so I'd like to bring up another clip we only have two more and this particular clip is five minutes and it's Michael small defining person Center [Music] [Music] plan Michael why is person Center planning important if people are to have lives that they want if when we're talking about people who are at risk of losing
• 63:00 - 63:30 control or have lost control of their lives if they're to have the lives they want then they have to have something that says here's what's important to me here's how I want to be supported here's how I want to live and that's what a person Center plan does it provides a description of what's important to the person how they want to live and describes actions so that they get the life that they want want and there are different styles of person Center planning aren't they say a bit about the
• 63:30 - 64:00 different styles and and where they are are useful and Powerful each different style is powerful each different style of planning has a different Power uh and if you look at the main styles that are used you would start with path path is a remarkably powerful way of defining a destination saying here's how I want to live at some point in the future and here's how we can mobilize people so that we can take the steps necessary to get
• 64:00 - 64:30 there maps on the other hand uh is really about how do I mobilize a circle that's around me and a circle would be a group of committed people who are willing to kind of walk with me and be with me and typically are mostly not paid and Maps is a way to mobilize that group and keep them mobilized and keep them committed and to be able to again look at a at a desirable future both of those planning formats assume that there's a committed group of
• 64:30 - 65:00 people that there's a committed group of people who are willing to walk with you be with you and part of the process is to mobilize and commit those people in their work essential lifestyle planning which is a third way of doing it assumes that there are people who are knowledgeable who know the person but doesn't assume that there's a committed group of people around the person it says if we can gather the information that tells us what's important to you
• 65:00 - 65:30 and how to best support you then we can make it happen essential lifestyle planning was really designed to be done inside systems as well as outside path and Maps were designed to be done on the edges of systems where you could find those committed groups of people I think people often get confused by all the terms that have person centered at the beginning and it'd be really good if we could just run through a few of those and get some definitions so let's start with person- centered approaches person centered thinking and
• 65:30 - 66:00 person- centered planning how do you define those when people ask you something is all of them have person centered at the beginning and and it truly is just a normal use of language it means the person's at the center of the effort it's not the system that's the center of the effort it's not the program it's not the agency it's the person so an approach that has people at the Center uh would be person centered and any approach that would be used
• 66:00 - 66:30 might be a strategy it might be a policy it might be a practice um but a person- centered approach is not a plan person- centered thinking on the other hand refers to a set of tools where you've taken approaches you've taken ways of doing the work you've taken the planning and you've broken them down into pieces so that you have discrete act discrete tools that can be used to support a person the core tool that we teach is being able to sort what's important to a
• 66:30 - 67:00 person from what's important for what's important to a person what makes them happy fulfilled content satisfied comforted what's important for health and safety and being a valued member of the community and if you can do a good job of sorting that and describe the balance between them then you've gone a long way towards being able to help the person get alive but there's a whole set of other tools go with that the second most commonly used is working and not working
• 67:00 - 67:30 what is working for the person what is not working for the person and you do it from multiple perspectives and it assists people in looking not only at how are we developing a a way forward but how is that way forward working how do we need to adjust it how do we need to take a look at it there's a whole set of other tools that that go with this that and we teach eight in the initial training but there's easily 25 or 30 that skilled
• 67:30 - 68:00 practitioners use so that's um person Center approaches and person- centered thinking what about person- centered planning and person- centered descriptions how do you uh describe those to people a person- centered description is a piece of a person- centered plan and a great deal of the work that we're doing now we're helping people get started by saying let's work together or let me show you how to work so that you can describe how you want to live what's important to you what does best support
• 68:00 - 68:30 look like what are other people really like and admire about you and that would be a person- centered description it's not a plan until it has actions associated with it lovely thank you very much [Music] okay so that was Michael small obviously
• 68:30 - 69:00 talking a lot about person centered planning and the various term analogy um associated with the person Center planning um process and approach um and you know I think he he really uh does a wonderful job of explaining it and I and I think of your takeaway is that the focus is on the person um and their strengths and how to build that support system around them so they can achieve some goals for themselves I think that would be a very important um area to
• 69:00 - 69:30 focus on and I know many of you as trainees you're going to become professionals or maybe you already are and you're working out in the field so really understanding person Center planning and that process behind it knowing it exists will help you as you work with people with disabilities you can look at a plan you can see um what you know what is what are this this individual's goals how can I support this person in that endeavor um you know so as future um professionals um you're
• 69:30 - 70:00 going to be you're going to need to know some of this information so that you can work with that individual and and help them um you know attain some of their goals we always say everyone has a strength um you have to kind of get to know that person a little bit but all people have strengths and building on those strengths um as Michael small reflected on is key in in building a plan and secondary of course is I think
• 70:00 - 70:30 the preferences that they identify I we shouldn't even say secondary I think preferences are right up there as well what does that person want for their life it's not what I want for them um it is what they want for themselves and sometimes families and people with disabilities don't agree necessarily on those preferences so that's where it gets a little bit tricky sometimes sometimes we as professionals don't agree with those goals right but we have to let people take those risks and have those learning experiences because
• 70:30 - 71:00 that's how we grow Elizabeth I have a another response to your earlier question okay Michel coming coming from Molly uh she says as mentioned in the past some people will never were never exposed to people with disabilities due to exclusion from society I believe within inclusion of people with disabilities in everyday life there will not need to be a new model as inclusion of all people will be become a new Society Norm yeah Molly that's great that's
• 71:00 - 71:30 that's so true um you know because we didn't have a lot of us didn't have an exposure to people with disabilities and and now with more and more people um living in our communities um and we're getting acquainted with them going to school with them um you'll be working with them as a future um professional as well and obviously the more we interact with people whether they have a disability or not right we um you know accept and um
• 71:30 - 72:00 with that hopefully we won't need that next that next model that is our hope so thank you for sharing that going back to some person centered planning thoughts here um there are some other key tenants to this planning results the plan has to be documented in ways that are meaningful to people who have disabilities um if you go pull some go to some agencies and pull person Center planning um forms you'll see that the
• 72:00 - 72:30 goals are not sometimes very easy to understand um they don't identify the support people involved to reach that goal and a person with a disability um sometimes can't understand the documentation so it's really important that we keep it simple that we when that they get a copy of the plan and this next slide is going to talk about um a little bit about some of the ways you can actually it's not the next slide but
• 72:30 - 73:00 there's some ways um Michael small referred to like maps and path um that utilize drawings and very few words so when you're documenting a person Center plan you don't have all of the you know the words there and for people with low literacy levels the you know the pictures and the drawing and um can support the ideas behind the plan in a way that's easily understandable to them so you have to keep that in mind as
• 73:00 - 73:30 you're facilitating a plan um so here are some other things to consider we need to focus on skills strengths and solutions and not problems we can't ignore problems in a person centered plan but it shouldn't be the focus of the plan we have to respect the values person the the person's values and opinions uh this is key building Circles of support that can make the goals happen we have to utilize if you're a facilitator you
• 73:30 - 74:00 want to utilize open-ended questions um would you like a job yes no no what would you like to do out in a job okay open-ended questions so they have an opportunity to you know really have a dialogue with the facilitator we need to arrange a lot of learning opportunities for people people sometimes have not had an exposure to things um and so again because of isolation and because of a lack of
• 74:00 - 74:30 inclusive opportunities they may have never tried some of the other things that you know some of us do take for granted um and we need to offer those opportunities to people finding me behavior is very important and I have a slide that talks about people who don't communicate in a traditional way well we'll discuss that a little bit more if you if you take responsibility to support a person then it's important that the person Center planning facilitator holds those people responsible to completing the tasks most
• 74:30 - 75:00 of all facilitators have to be flexible creative and collaborative as they move through the process this pre-meeting agenda is what I believe he referred to as sort of the person centered description piece um this is getting to know the person so before you have the actual plan it's important to have the pre-meeting and this is where a good facilitator finds out does this person use technology to communicate how do they communicate best um what are their
• 75:00 - 75:30 dreams what are their fears what are their strengths really getting to know that person and sometimes people question what is your dream um they might say well I want to be a teacher um or you know I want to be a doctor and you might people look around the room and this will be a person who you know doesn't read or you know doesn't right perhaps and the a good facilitator kind of carves something from that that is still
• 75:30 - 76:00 meaningful to that person you know so that they're they're maybe guiding them in the process okay you like teaching like showing people things um you know have you thought about you know may maybe working as maybe a par professional or as an aid in a classroom so there's ways to guide the process without um debilitating people's dreams and making them realistic and attainable and that's a very build facilitator that does that um and then some of these other things that I'm not going to get into with every bullet but the the most
• 76:00 - 76:30 important thing to Come Away with is good person centered plans just don't happen Okay it take planning process um and the opportunity to get to know the person sometimes people don't converse sometimes people don't communicate traditionally and things to know about um people who don't use traditional communication is that sometimes their behaviors are the way they
• 76:30 - 77:00 communicate just because I say this all the time because my son Robert doesn't talk and people sometimes say oh I bet your children never have argued well no that's not true at all they argue and just because Robert can't talk he lets be known to his siblings what it is he likes and he doesn't like so you have to know and they know they know when they're ticking them off too so they know those behaviors and they know what he's trying to to tell them and it's very important as we work with individuals with um disabilities and
• 77:00 - 77:30 those that do not not not speak um we have to learn that that behavior is not not them being non-compliant which is a label we've used too often in our industry um but it's a way of communicating and understanding why is that person exhibiting that particular Behavior at that moment are they frightened um did they feel uncomfortable with the people in the room you know um what are they trying to
• 77:30 - 78:00 convey and so reframing that behavior as communication understanding why that behavior is being exhibited is very important um and also technology Now is really supporting people um there's so much out there people are working a lot with iPads there's all kinds of programs out there people don't really need dinoes any longer which are very expensive uh tools there's so much accessible um computer technology now
• 78:00 - 78:30 that it's it's helps even the most um you know people who are most challenged in using um traditional communication devices so I always ask what you know do do this do this indiv individual use a communication device what is it how do they communicate whether it be a PEC system which are pictures they point to to a dynabox whatever that range might be because it's really key to understanding how they communicate so we can really work with them here's some
• 78:30 - 79:00 things person Center planning is not um they're not safety plans you know they're not um you know ways of teaching people uh safety or um evacuation procedures during a fire drill they're not weight calorie reductions um they're not medication compliance plans they're not a hygiene Improvement program and believe it or not an and I are kind of smiling we've both seen this on person centered plans they are not walking
• 79:00 - 79:30 programs we're not going to all go to the mall and walk around the mall um you know with with all the same people um when you pull and you monitor the quality of a plan um you want to look at do people who all live together have the same plan because that's an indication that the plan is not individualized but in reality the plan is there to make life easier for the group home provider or whatever living facility the person it is so it's not walking programs um
• 79:30 - 80:00 it's not assessment of care plans it's not the it meeting which I talked about earlier where all the professionals sit around and talk about the individual and they're not a part of it it's not the therapist reports it's not how to make life easier for staff many supports coordinators are currently the facilitators but there's there's another model out there facilitate the person Center plan the the other model out there um and it is actually U Medicaid
• 80:00 - 80:30 reimbursable service is independent facilitation I'm not going to spend too long on this I think maybe your takeaway needs to be that independent facilitators are thirdparty individuals that are trained in how to conduct a a person's centered planning meeting um we actually do this training at my DDI um and we train people in how to facilitate a plan we teach them all about the process now the good thing about this and one of the evidence-based practices that has come out of this is
• 80:30 - 81:00 that it gives people who utilize the service system um an opportunity to have someone who is not being paid by the agency to run their person Center planning meeting so you can see where it gives them a different level of Independence in this process um independent facilitators are paid by the organization that represents them usually like I said it's a Medicaid reimbursable system um they should not be employees of that organization
• 81:00 - 81:30 however um they should be independent of that organization they can be family members not all the time they should be people with disabilities um I think that's the ideal situation um we know a lot of people who have disabilities that are independent facilitators that have gone through the training and they're in very high demand at the agencies that are profiling that because people with disabilities call upon them because they do bring a unique perspective to the
• 81:30 - 82:00 process now there are legal requirements within a person centered plan that a supports coordinator or a case manager are required to complete so that it can be put into the formal plan at the agency and so what an independent facilitator does is complete the plan with their notes and gives it to the support coordinator who then puts it into the form that they're required to so they meet all the legal requirements of the agency in our previous slides
• 82:00 - 82:30 we've looked at person centered planning and independent facilitation and now we're going to discuss self-determination what is self-determination self-determination is an individual's ability to set goals to create a meaningful life for oneself and that comes from experiences and from making choices and living through those choices and then learning from what works from us for us and what doesn't work for us right so we have to take
• 82:30 - 83:00 chances and sometimes try new things to create a new level of our life and so self-determination is about empowerment it's empowering individuals to create meaningful and per purposeful lives for themselves self-determination is not a program it is a process the ultimate goal is for that individual to control their life life and how they want to live their life and and to identify areas that they feel are important to
• 83:00 - 83:30 them if they want to have a job that means getting a job if they want to go back and get some training or education they can do that if they want to volunteer in their Community that's an option that they might want to explore there are five critical elements in the literature regarding self-determination and the first is freedom freedom is the ability to decide how you want to live your life and we all want that don't we we don't want other people telling us what to do and
• 83:30 - 84:00 how to live our life what time to get up what time to go to bed what show we're going to watch on television what we're going to do online we want to be able to make our choices and this starts with where do we want to live how do we want to connect every day in our lives with people in our community it's the opportunity for us to engage our life but also to contribute in our own way ways it's the development of a personal Lifestyle the second critical El element
• 84:00 - 84:30 is Authority and this regards over a targeted amount of dollars to purchase supports within the backing of our budgets and what we need it's the authority to control resources so it's not only our mental health dollars that we receive that dictate you know what we have to spend on things but it's also other resources you know do we have a job um do we have um other resources that are even non-monetary that we need to think about
• 84:30 - 85:00 as we allocate resources to develop our goals the third element of self-determination is support and this is looking at ways to organize resources and ways that are life-enhancing and meaningful to a person this means PRI prioritizing our resources and dictating if we need staff and how many staff we will need to help us engage in an activity do we need natural supports or
• 85:00 - 85:30 people that are unpaid staff that are in our lives like neighbors and friends it's the support that really helps an individual with an intellectual or developmental disability reach their life dream the fourth critical element is responsibility and this is the wise use of public dollars and the recognition of the contribution that individual ual across disabilities and aging can me to their communities this means we're responsible
• 85:30 - 86:00 for knowing what our budget is for examining our budget on a regular basis and seeing where our dollars are being spent what activities if we receive Transportation how much does that Transportation cost us from our public dollars also it does make good sense to understand and know what what other disability populations are working with and the Aging population also uses a
• 86:00 - 86:30 similar model um as they need support to live their lives fully in the communities so sometimes meeting and joining these other groups and understanding what they do and what's working well can help make systemic changes as we create a sort of synergy um in that process the last critical element is confirmation this is the important role that we play as individuals in the newly
• 86:30 - 87:00 designed system and the role we play for helping others replicate that system responsibly and teaching how other people can have self-determined lives really self-determination is so key I can't stress enough how it's it's such an important process um because it's one of those things that without it it's one of the the foundations the building blocks and it's
• 87:00 - 87:30 very difficult to build like the person Center planning process and and the other um practices that we use in the field without the self- determination and so as future professionals um you know you're going to be learning some of these things and and be kind of like cognizant of how can we help build people's confidence how can we help them identify their strengths how can we help them you know attain goals and the
• 87:30 - 88:00 confidence to attain those goals and this moves me to Natural supports the term natural supports is a term that's not used very much out in the field anymore um what we are calling it now is like a circle of support a circle of friends and you've heard me talk about this throughout the the the community membership model um lecture and the it's so intrical to people's success um an and I work on another
• 88:00 - 88:30 project the MCI project and we do surveys with people who have indiv individuals have disabilities and one of the are several of the questions on this National survey get at how often you get out in the community and what I've learned from doing the process is that people who aren't really supported by this circle of friends are really dependent on one or two people like maybe providers to get them um to community events and when that happens
• 88:30 - 89:00 it's very difficult for them to get out in the community and to participate in activities um fully and so this is where this idea of Circle of supports or circle of friends needs to be expanded on for that individual so that they can more fully participate in the things that they want to participate in and this is where're getting creative becomes very important thinking a little bit outside the box um who could be an
• 89:00 - 89:30 individual um that could support that person that's not a traditional provider like a direct care worker or um you know maybe it's a Neighbor Next Door or maybe it's the college student whose age appropriate with that individual if it's a young person with a disability um and how do we link those people together but this the support system is so important so that people can actually access community and expand um what what they're participating in in their life
• 89:30 - 90:00 so a big part of all of this right are the family the friends and the community supports are a way to offer assistance to people with and without disabilities and in the context of everyday places in their communities friends and allies allow a person to have less Reliance and paid professional help which is often unavailable and often goes away and they are often the individuals preference over or the for less familiar support offered by organizations and we all need to be a lot more creative I think as we work in
• 90:00 - 90:30 the field about thinking about that and how we can make that a reality um for people there's both paid and unpaid supports um not everyone has a circle of friends so we have to develop that circle of friends sometimes from scratch for people developing a maintaining friendship is hard work um whether you have a disability or you don't have a disability but one of the things that I hear most whether it's from parents who have children who are very young to
• 90:30 - 91:00 adults is they don't get invited to things they don't go to the birthday parties when the kids are little they're not a part of it um as adults um they don't have interaction with other people who are in their age group not doing the same activities that people their age are doing and so this is where're making this link you know building this support develop in friendships is so key because that is how people are going to um
• 91:00 - 91:30 participate and their life is going to become Fuller and now think back to yuie bronen Brunner and that whole theory about mapping and systems theory right and the more your life is active the more you're involved in quality of life goes up self satisfaction goes up so friendship is really important and if you think about your own life right your friends are very valued by you people with disabilities don't always have access to friendships they were always
• 91:30 - 92:00 in specialized programs they may have lived in institutions and they they're really depending on that Circle widening and if you think to Greta um you know Greta's sister is part of her Circle but also that woman that works after's office now she's a friend of Greta okay so we have to think about this um as future professionals and how do we um create this type of environment and create create friendships for people so this is our summary on the
• 92:00 - 92:30 community membership model um that these are some of the problems um that we're still experiencing in this Paradigm people with disabilities are often poor we've been talking about that a lot here in the last few days um they you know they're making under $15,000 a year um someone in our office just conducted a literature review and found this um fact so you can imagine they're living in less than $15,000 a year um you they're living
• 92:30 - 93:00 below the poverty level they need training in schools that will equal jobs that will equal real money we need to stop School segregation or work towards advocacy of that um special education does not translate into jobs and there's reams of research and literature on this the unemployment rate for people with with disabilities is still hovering around 75% and it has been for 30 years there's a shortage of Direct Care Work Direct
• 93:00 - 93:30 Care workers to help people with disabilities live their lives again this is a this is a very big problem um and we spend a lot of time talking about this in the field but we don't have any um hard and fast answers yet we need to teach self-determination skills to Children wherever you are in your professional career if you're a student think about this and how can we how can we support children in this and parents in this and caregivers um and we need to take and
• 93:30 - 94:00 let people take risk from the choices they make and learn from life because usually that's how we learn better decisions remember back to that 1970 paper right remember that one bullet from The Advocates that stated they don't want to be coddled so that's something we need to take to heart this is some work we're we're working on currently in this model but we need to do more work around um people with dis IL should be living in inclusive communities there's legislation out there right now that we're working
• 94:00 - 94:30 towards um putting some teeth behind policy so that people can live in homes that they want to live in instead of living in um group settings or living home with their families people want to determine and should determine how their lives are lived we need to continue to utilize person Center planning and improve this process um as an important important evidence evidence-based practice as it lays the groundwork the whole map um for a person's life
• 94:30 - 95:00 self-determination again can't say enough about this it's ENT essential it's an essential ingredient for all of us um we need to do a better job of asking the person what they want for themselves and not assuming what they want for themselves both as family members professionals um and and wherever you're at um as a trainee we need to think about what that person really wants and forward with that continue to build Circles of support this is a challenge um and we
• 95:00 - 95:30 need to continue to think about um exemplary models that that we can move towards to build friendships and to build community connections um which lead to opportunity opportunities for people we need to check in and see what's working and not working and continue to improve on what's working and let go of some of the old practices and things that are no longer working for people people with disabilities and moving them forward and enclosing Community is essential to living a vibrant life communities mean including
• 95:30 - 96:00 all members of that Community from our people with ID to Elders to people with physical disabilities mental health disabilities um and after all um it's important it makes our lives richer this interaction that we have um with our diversity I do have one last clip I'd like to show you in closing and maybe youall can think about questions
• 96:00 - 96:30 [Music] n [Music]
• 96:30 - 97:00 are there any other questions for anyone before I turn it over to Ian to kind of review the homework and for next week
• 97:00 - 97:30 yes uh Ed has a question could you talk a little more about the individual's goals and priorities and the support team's concerns about safety for example an individual with motor impairments wanting to go to a less accessible home where safe evacuation may be a concern what factors do you weigh that's an excellent question it's it's something to consider um what other accommodations can we make um that's where we want to
• 97:30 - 98:00 look at this so is there a way we can have this individual living in this this home that he really wants to live in and how can we change and accommodate that person's disability so that they're still safe so there's maybe many things that can be done um maybe you contact UCP and if it's a ramp issue there are Grant funds we can put in a ramp um if it's a question of you know uh second floor availability maybe we have a bedroom on the main floor convert a study to a main floor um so we have to
• 98:00 - 98:30 get creative here uh we don't want to create a risky situation but there's so many multiple accommodations we can make so that this person can live in a home that they that they want to live it and so that everyone feels comfortable with that I hope that helps answer the question right well I want to thank everybody um it was a great honor to be a part of the lecture series