President's address 2010. Are we still moving forward: at the intersection.

03Original abstract

I think that, as we determine the building blocks to the future, we need to look at what we have decided in the past. The funny thing about intersections is that we often see them not as stopping points or places to explore new options but as places to plow through to get to the other side. There are numerous intersections or decision points that we must now cross. I talk here about several of these that I think are fundamental for the future of services for people who have intellectual and developmental disabilities.First, I want to share my current beliefs and how I reached them.My older sister, Marcia, had Down Syndrome. She was the oldest of a large family, and she enjoyed being at the head of so many sisters and brothers. She was not only part of our family, but she was very involved in our neighborhood growing up.Education was very important in our family, and Marcia started school at the age of 5. In those days, it was thought that people who had Down Syndrome could not learn to read. Marcia loved sports. So, she had one of us younger siblings read her the sports pages in the newspaper every day. When she was a teenager, she had my brother, Robert do this reading. No one had told him that she could not learn to read. As a result, when he got tired of reading the sports pages out loud every day, he taught her to read.Marcia was incredibly likeable. As my husband once said, Marcia always made you feel that you were special. I remember once when my brother, Michel, received a call from the bank manager of her bank. Marcia was there with a check she had gotten from Michel because she said she needed money to pay her rent and did not have it. He wrote the check to the landlord. Marcia had convinced the bank manager that it would be better to let her have it in cash. The bank manager was asking—actually demanding—Michel's permission to give it to Marcia in cash. I do not know about you, but my bank would never make that call for me. Marcia was, without a doubt, one of the most amazing people I ever knew at convincing other people to do what she wanted.Marcia assigned me my career. She explained that things needed to be fixed so that people could live the way they wanted and be part of their communities. And she made it clear that she would be doing just that, working and being with friends and neighbors and others in her community. She was not planning to become a self-advocate. It was my job as her younger sister to create services and teach professionals so that the system would allow this to happen for everyone.My beliefs also are affected by the work I have done, work that is the result of my assignment from Marcia. Primarily, I have been involved in designing and implementing service coordination services, family and individual support services, services that people now call fiscal intermediary services, and in systems advocacy. I teach social work classes at the University of Maryland School of Social Work.I have a number of very definite beliefs. They include the following.People are much more capable than we think they are.The vast majority of families are healthy in how they function. All families need to be approached as if this is true until they demonstrate otherwise. We need to realize that we often see families at their most difficult points, when they are seeking assistance or when they are upset about how something is happening, and that they, therefore, will likely not look as healthy as they actually are.Our role as professionals is about supporting, not being in charge. So we have a responsibility to listen well and not make people ever feel that we know better than them what they should be doing.We have another and seemingly contradictory responsibility. It is our role in teaching and inspiring. That responsibility is two-fold. The first part of it involves responsibility to help people dream of more than they currently know is possible and help them expect to live enviable lives. The second part of this responsibility is to create supports and services that people never dreamed they could have. These become services and supports that they love when they use them. Think of this as Steve Jobs and Apple, creating products that we never imagined but cannot live without. A quick definition is in order here.An “enviable life” is a life filled with purpose and meaning. It is a life with people you care about and who care about you.We need to use both support and teaching to help people have the skills to live enviable lives. This means we can help someone learn a skill, or, if it makes more sense, we can get someone to support a person so that they do not need to learn that particular skill. We need to do both, not just one or the other.It is our job to respect and protect government and donated monies. This means that we spend these in responsible ways that we can justify to taxpayers.The power of each individual is very small compared to that of the government. We need to represent each person and family in a way that equalizes this power or narrows this power gap.Leadership is about teaching and inspiring and demanding that everyone be better than they think they can ever be.What are the intersections that we need to determine which way to cross or turn? There are several.I believe in self-direction and self-determination. It has had an important role in changing how professionals think so that we view ourselves as providing supports to enable people to choose how they live. It clearly defines our role as supporting rather than defining people's lives. It forces us to see the world from a different perspective. Nevertheless, it has created a messy intersection with some issues.One of these issues is that people we serve often are afraid to just step out there. We spent years where I work talking to people about participating in their communities and making individual linkages. Our successes were there, but they were nowhere near as great as we had hoped. When we stopped and figured out ways for people to test the waters, our successes came much more often. For example, we partnered with the local art center on an art class for people with intellectual and developmental disabilities. Many people took this class. It included people who had been afraid to take an art class for years. After taking this introductory class, they felt much more able to navigate the other classes at the art center. Now, people are involved in the other inclusive art classes there. When Maryland had monies for serving people on the waiting list after years of their waiting for services, we found that people who had said they wanted to move from their families' homes hired staff and then just sat at home or they did not staff and had numerous for not doing After talking to people and their families and their we thought an out step was one person and family, we started what he the a we him rent a at a We him and family to staff to with He skills to live on He and family had to get their as We are this now with a class at the local and in creating a We need to that people and their families have and think about how to these that self-direction and is defining the role for people who do not want to be in their lives. we they have to do this is a intersection that we have created by that means that can be by neighbors and that there is not in serving people who have intellectual and developmental disabilities. This has at a have to many as and that could them. This is true for could be if they received teaching and It is important to a way to the so that people the social of supports but the that will is a need that I from people and their families for the system to become not being and The view that to be part of that people with should services in the ways as everyone in their communities that can with a a support a fiscal a a job a job a and As a result, the services become very to the of what people they that some in the of self-direction and is that from very different The first is individual and family support services, where people have money to pay for supports and The other is people from where in which often in of money to supports and the of support coordination for the first is much more it is difficult for to this because they often view this as support rather than an service for the the most intersection that the of self-direction and has to is that of providing individual providing many other in the The of to family support that, we had family but at this we were a small of of service money to the support coordination that families in supports and services in their communities. The of family support services this the of a support to that this was at as important as the of money for at The of we this service by people their staff and as an for A of this role involved providing support to people in making this work was was services not We the person a The supports and services in this were as supports and services, not or an individual we after with that they that being to care for a family the of the in a we did not pay family to do a or if one to call it that, about a this in the we started people and their families on a how much money they had their individual to them each the of years. and families to view the money as part of their individual or family not as part of a of They to to a new staff person when a staff person they hired They to on the of staff they had felt they they started that they had not been able to but that they They wanted and When one person would others would and want one as We had with people about the use of but they were clear that they felt the money had been to them. It to the of our from people with services to being the people who were or the people who always said It was a difficult and we decided that it was not to where we felt was the of the or responsible use of government monies. So, we stopped about and about services We started talking about planning and implementing those of individual It took several years to the individual planning to being the of how monies were I think this intersection is a the to money from services as we justify to and others how we spend the that are for each I think the of what we should be to people is individual services, in ways people not a of monies to This is a where the by the on and can assistance if we the planning of it as the second step after it is to determine for each is an intersection to which we we have a new for how services should be We to plow through the intersection to that everyone has a or or service we have to be what everyone should we believe that people should be in of their with in a supporting and if we are then it means we will different things from different we should have some and of what is government monies to pay for or that is very different than everyone must have A of people of their is that we be about that of our each and every and is an intersection we came to many years that I think we need to We often about the system to to people who have and people who are very in their It is important to to the issues that people to have and many came from who can us in what we we a step and of our new for the system their I believe that this is a that to be some of the people who not only get the and get they but they are also the people who want to their to their or lives. of what we about has been on this and to a system where families the staff and as support I from people I the that this and the work that with this is a very small in my I a of at the where I to do a at an staff to us what they thought of the services they were and what they wanted in the The most part of their talk was when one of them a service and then he said, is we know you are very and the of the with him in The majority of people we serve do not want to our when they people to give than they about this vast majority of people who are and I think we would that they should not have I think the service system must be so that they services that result from to how each and every person or her services to be I talk to they often that they want a sister, brother, or with their family not to have to be their making their services people they want is a system that is to and their or their family They want someone who They want to have staff they they that people get what they when they need in ways that they I and that people get tired and do not being responsible for making their services work They see as a very clear role in and individual on this intersection contradictory to my that is but they are I is that it is important that we not just responsibility to and their Our role as is to give people in how people their individual supports and will often providing a of When I look at the individual services we at The we work to make that what people and their families to do is the We this often with them to that what they to is possible for them. I also believe that many people will choose more services than as an and I believe those options should be is an intersection that where people on waiting with or from this are the people who and or services, what we have much of these services, and many of these that people are to they many people have very This is the intersection of the and is difficult to believe that the will is that everyone who and services will them at the of that currently in our service systems for these We have to make and these are difficult because the most is the of not of and not of who are It is important to create that enable service to and or as people's This is not the as that need more which we have it as meaning. of this involves providing support to people on so that they never need services but these options if and when they do them. in the system actually if people that these services would be when by them. of the here also involves seeking new for example, better of current creating new that only allow new people the system to have a small of people that this is but it is a of what was to how this to being an of in it more not a on waiting and people who have services have been on their for years. When they are for it is not a of us in and them to use their It is about And it is about in our of the is that the of to be must view as part of at one if not that person and allow to This is not to that do not have a clear responsibility to people with intellectual and developmental for they need to be to support and not them in and need to their as of our as a service system is that we have well a where are When I look at of services in my which is often as the in the the of services is very compared with the in the I think we need to see that as an that we have to must take on the of creating in our service system that allow everyone to be are to an intersection where we will be to have service or support or both, and one as working for the and one as working for the The on it is a of for someone to work for both the and as well as for the are at this intersection because of the service system has in people's and the of service to Our for system has been to the service We have not the or the as In the be that we have not we said we would in service We have not them with We have not them We have not made it clear that they work for the person as well as the and that they work for the person first and their role for the is We have rather than them when they and is important that service be as able to work both the and the is very of this it has an incredibly with people and their need to in service job it is to be the from both the person and the need to in service who people through an need to in service who can help the listen to and They need to in service who they believe have the at with those of people need to in a system of service who represent both the and the so that government can that the made are in the of both the and the person as well as government be more about how much these do have in the role of support should be to people who want individual support in services and in them. They should be responsible for making services work on a their should be as for each person they their role is to that the supports and services are working each and every day. They are without and should be part of They also should have the to as fiscal as part of their rather than in the of fiscal intermediary people and families I know talk about the system They feel professionals the for of support fiscal and creating a system that is one that in their to much of their to making services work and not to their and their families talk about of the This what you need when you need it. This service that believe in the of services, that view as to how people want to live their that and support and to enable people with intellectual and developmental to live enviable and that the of families in of our service coordination often that they cannot how they would ever to live without it. I remember one that, as as it it was a to know that she could because she knew there was a system to making work for her I think this what the is capable of what the service can be if we in it as a to people also me to believe that systems the power of the person rather than their systems on others to help them. out service support fiscal and with often creating many more for people to to an and This intersection to become if people are to actually have is the intersection we with many current in on and the of in the The of this intersection is in how we the we people who with more as the is or do we with a more people I talk about the second as more than a I want to talk about how to make this work because I think this is the to take rather than taking the to become we older want to the we have to to with the that, as for we believe in our that we can do In in our we have a to be about our beliefs. This is to us to to this will not help on to the or to people with intellectual and developmental as the of has me for a that we do not to think we have people to take the of the It is when you realize how many of us when we were This that people us and us with what was to learn to become It that we just took and started what we thought was That that we have not others to do that by providing the and in is of work very to create the and support for their to move on and and with them at other They not if they are where their work after they their that in what could we be doing in the to create more We have to create teaching We have to not only work on creating where teaching and of staff are part of the but we have to create that and create an where staff want to The by where professionals work is very of involves providing for then of those then by the and then of that It involves through their by at their and as is part of creating that people know that they can talk to in the rather than being to the for where people are to the what is working and what to be and never for that people to this as I to school to get my when The of had in to about staff because I that what I said, the made it for people to think I it when I said they could with me. I thought that and would have me when they thought my were this to staff has been one of the most important ways I can that I need to other and create we have to move the current which has not been for many of the by people with in this This also involves never because they are much more about than or It planning to enable staff to actually make things happen for people we is important to the of our The of the vast of on cannot be teaching to the working to will not result in there is a on individual staff and when are involved in systems advocacy. This is true not only because it the of work that not but because it that everyone should changing the when they do not This is a very part of being a is not people what they that not just doing to out In I had the to a service that I had wanted to do ever I started my first The came to me about a person who needed He had in an for a but had so much to the that he had been to move home with a staff to services in their The was stopping services because the the about once a to about the and the staff they hired never more than a In it was than because the would actually call the and at them about once a The had and was stopping As a result, the was I said that it was clearly a of for us to do service coordination and services, but I had an of what I said we would very service coordination and as a The service would help the family and their staff and in other way the family as the family would have and be the of their support the family would be responsible for making it work because the service could not be to if someone did not for work and we did not have other staff who could do this I was because the were to have this the was at them as and other was in providing We started this of providing very service coordination and as a The the the first when I to pay her staff because she to which had been part of the after she with the services, as was the of the The staff who were there at the and had been by the to for and It was a service that the family had never thought but it their in a way that they had thought of one about in the often demonstrate well that should create the future has thought of We need to younger in our to do this as what are the building blocks of the we We have made in the in of people with intellectual and developmental disabilities. There is in many neighborhood There is a that people have a to an There is government money to support people in their in small services or through individual and family Many more people are in their and there is a that with intellectual and developmental should have services when they the school are to small of people with intellectual their and there is more work to be in of but we have a way in the have not as in people being in the social life of their communities or their as well as This is the most difficult to create because this us to be in our communities It now more difficult because the very of is more in and in Our job in the of our work then is to people we serve in both of these the communities and to and designing the communities for our in there are that we should on and in to how to move through the intersections that I have we to to move then we should be about for people we We need to a system that is for government to is not for and their families to and and not on the of individual but supports and services that people to become part of their communities and communities to become part of their important building for the future that we need to much more is as a supporting in people in participating and being more as well as which is one of the building blocks of our that we now have in of this look at involves out how is changing with the and how to include people with intellectual and developmental there in of social and building is to each and every person with an intellectual or developmental and or her family and this to allow for more than one for supports and of these services must in of supporting people in enviable in their but part of the future is that new will create new and better options and that this and and will the issues that we to my we are We will to need to do so the

Intellectual and developmental disabilities, 2010 · doi:10.1352/1934-9556-48.6.470