It just snuck up on me or I have been to busy to notice, but my daughter will be leaving the education entitlement in June and now begins the road to her future.
Futures4all is a grassroots parent formed action group that hopes to implant some seeds of hope in each of our communities.
Check out my blog for a link to it.
Thats it for now!! Busy, busy!!
Friday, March 25, 2011
Thursday, December 16, 2010
Repost from a few years ago....
My soapbox for today!!
Envisioning the Future of Supports for People with Disabilities
Nancy Weiss, Co-Director, National Leadership Consortium on Developmental Disabilities,
University of Delaware; April 2007
How often we wish for the kind of wisdom a crystal ball would offer. Wouldn’t life be easier if we knew
on the first date where this relationship would lead, could predict our grade before we signed up for the
course, or could see our children happily established in their adulthoods? What if we could see what the
world of services and supports for adults with disabilities would look like a dozen years from now?
One of the things I love about working in this field is that we can all be embarrassed by everything we did
more than ten or fifteen years ago. It’s good to be embarrassed? I think it can be; in this case it means
that things are constantly changing for the better. It means we are learning from people with disabilities
and their families how to do better with them, for them, and for our communities.
So, why do I cringe when I look back at my early work in support of people with disabilities? While I
never did anything awful in the first years of my career, nor did I offer the kinds of supports I would be
proud to bring to people today. My first job in the field was as a direct care person in a group home for
ten men with intellectual disabilities. Together, we had a great time – we cooked great meals, explored
our town, went on trips to baseball games, county fairs, and just about every imaginable kind of
adventure, and we all learned some important things in the process. The downside was that the power
differences between “staff” and “clients” were well accepted. We were the teachers – they were the
learners. Reflecting back now, I see how often those roles were reversed.
Toward the end of my time at the group home, I returned from a vacation to London, bringing back a
small gift for each of the guys who lived in the home. I showed Chris the keychain of the double-decker
bus that I had brought for him and, wanting to capitalize on every teaching moment, I said, “So, Chris –
what’s different about this bus than the kind of buses we have in this country?” Chris took a moment.
He carefully studied the bus. He turned it this way and that in his hands, glancing up at me to see if I
might be trying to trick him. Finally he said, in a voice that conveyed wonder at why I would even be
asking something so obvious, …. “It’s smaller.”
It was among my first lessons toward understanding that teaching and learning go both ways. While the
supports we offered the men who lived in that group home came from the heart, I now look back,
embarrassed by the degree to which we as staff held ourselves out as being more important than the
people we supported. And today, I cannot imagine thinking that ten people who didn’t know or choose
each other would be able to live the lives they wanted in a big house, all together.
So -- if few of us would brag about how much foresight we conveyed through our work in the disability
field a decade and more ago, what will services and supports for people with intellectual and
developmental disabilities look like ten years from now? What changes will cause us to wince in looking
back from that vantage point? Acknowledging that things are changing more, not less rapidly, we can
assume we will look back and wonder what we were thinking when we recall the supports we are certain
are so forward-thinking today.
How do we articulate a vision for our work if we don’t know where trends will take us? Unfortunately,
we don’t have a crystal ball – but if we did, what would a gaze into those murky depths tell us about the
lives of people with disabilities and the system of services that supports them a dozen years from now?
Here are my guesses – or more accurately, my hopes – for a better future for people with disabilities and
the supports we provide:
People and their families will be less willing to accept standard packages of mediocre
services and will demand quality supports that help them achieve self-selected goals. We will
have abandoned the hat-in-hand attitude and will understand that people with disabilities no more
want or deserve lives that are tedious and lack meaning than would anyone else.
More resources will be available for people living with their families and in their own homes
– rather than requiring a Medicaid Waiver when people choose to live lives of their own design, a
waiver will be required to use public funds for services in traditional settings that we have already
proven to be less effective and less life-affirming.
We will do for people what they want and ask for, rather than what licensing or other
standards say are needed. We will document the information that will be useful for that
person rather than doing for people what needs to be documented. We will keep in mind that
Martin Luther King, Jr. said, “I have a dream.” He did not say, “I have an annual plan, a bunch of
uninspired quarterly goals, and a three-pound pile of paper that keeps track of it all.”
We will realize that you can’t give what you don’t get – we will stop expecting staff to treat the
people they support as valued, important participants who have impact, within organizations that
offer staff so little of the same.
Society will be as unwilling to tolerate the abusive treatment of people with disabilities as
they are the treatment of others. If information became known about substandard treatment for
people with disabilities, the public would rise up with the same energy and outrage as when abuses
of prisoners at Guantanamo and Abu Ghraib became public.
We will offer an array of supports that are responsive to what people want … not a support
system that still contains relics of old models just because it is hard to find the momentum to rid
ourselves of inherently controlling and coercive approaches and not a support system that exists
because it fits with the way funding is provided. In architecture there is a saying, “Form Follows
Function.” It means that structures are designed based on the way they will be used. In our field
the influencing principle has been “Form Follows Funding.” Do we think opening another group
home is a good idea? No, but we’ll do it anyway if funds are available. We will rid ourselves of
the ball-and-chain of traditional funding streams and celebrate when the ‘form’ of supports is
directly responsive to the needs and desires of the person requesting those supports.
We will pay people who work in this field salaries that reflect the value that we place on this
kind of work. People will not need to work in settings that place less value on the people
receiving support, in order to receive salaries that would appear to reflect more value on staff.
It will be recognized that institutions and other highly controlled congregate settings are not
good for people and they will become a thing of the past. We will once-and-for-all give up on
the alluring concept of preparing people to live and work in the real world by providing training in
“unreal” settings. We will similarly abandon the readiness model – we denigrate people when we
demand that they demonstrate readiness before we will “allow” them to move on.
We will finally figure out that it is not only unethical but downright illogical to respond to
people’s desperate attempts to assert a degree of control over their lives by responding with
efforts to impose greater and greater amounts of power over them.
We will recognize that loneliness may be the most debilitating disability of all and we’ll
figure out ways to support our communities to embrace all of their members. As Norm Kunc
reminds us, no one should have to earn the right to belong. We will recognize that people
shouldn’t have to be like each other to be with each other1.
We will train and develop professionals to become leaders who understand how to use their
talents and gifts to help people with intellectual and developmental disabilities achieve their
dreams, not the dreams and ideas of other … and this will be more rewarding to professionals
than telling people what is wrong with them and prescribing a program to “fix” them.
We will recognize that quality of life has a whole lot more to do with personal relationships
and a sense of community than it does the ability to fold laundry, balance a checkbook or set
a proper table. We will acknowledge that the promotion of choice and control needs to
supersede all else.
We will take a page from Copernicus’s book. Copernicus asserted, contrary to what the world
knew to be true, that it was the sun, not the earth that is at the center of the universe. The heart of
our work will be in helping people assume their rightful place at the hub of their own universes
and supporting the discovery of their own power that awaits them there.
Nancy Weiss is the Co-Director of the National Leadership Consortium on Developmental Disabilities at
the University of Delaware (www.nlcdd.org). She is the former Executive Director of TASH, an
international disability advocacy association. Ms. Weiss has worked in the disability field for over thirty
years. The consistent theme of her work has been the promotion of disability supports that assure
communities, schools, and work places that offer individuals with disabilities access to lives of meaning
and impact. She can be reached at nweiss@udel.edu .
This article was originally published in the Spring issue of HopeNews, a publication of Hope House
Foundation (www.hope-house.org)
Envisioning the Future of Supports for People with Disabilities
Nancy Weiss, Co-Director, National Leadership Consortium on Developmental Disabilities,
University of Delaware; April 2007
How often we wish for the kind of wisdom a crystal ball would offer. Wouldn’t life be easier if we knew
on the first date where this relationship would lead, could predict our grade before we signed up for the
course, or could see our children happily established in their adulthoods? What if we could see what the
world of services and supports for adults with disabilities would look like a dozen years from now?
One of the things I love about working in this field is that we can all be embarrassed by everything we did
more than ten or fifteen years ago. It’s good to be embarrassed? I think it can be; in this case it means
that things are constantly changing for the better. It means we are learning from people with disabilities
and their families how to do better with them, for them, and for our communities.
So, why do I cringe when I look back at my early work in support of people with disabilities? While I
never did anything awful in the first years of my career, nor did I offer the kinds of supports I would be
proud to bring to people today. My first job in the field was as a direct care person in a group home for
ten men with intellectual disabilities. Together, we had a great time – we cooked great meals, explored
our town, went on trips to baseball games, county fairs, and just about every imaginable kind of
adventure, and we all learned some important things in the process. The downside was that the power
differences between “staff” and “clients” were well accepted. We were the teachers – they were the
learners. Reflecting back now, I see how often those roles were reversed.
Toward the end of my time at the group home, I returned from a vacation to London, bringing back a
small gift for each of the guys who lived in the home. I showed Chris the keychain of the double-decker
bus that I had brought for him and, wanting to capitalize on every teaching moment, I said, “So, Chris –
what’s different about this bus than the kind of buses we have in this country?” Chris took a moment.
He carefully studied the bus. He turned it this way and that in his hands, glancing up at me to see if I
might be trying to trick him. Finally he said, in a voice that conveyed wonder at why I would even be
asking something so obvious, …. “It’s smaller.”
It was among my first lessons toward understanding that teaching and learning go both ways. While the
supports we offered the men who lived in that group home came from the heart, I now look back,
embarrassed by the degree to which we as staff held ourselves out as being more important than the
people we supported. And today, I cannot imagine thinking that ten people who didn’t know or choose
each other would be able to live the lives they wanted in a big house, all together.
So -- if few of us would brag about how much foresight we conveyed through our work in the disability
field a decade and more ago, what will services and supports for people with intellectual and
developmental disabilities look like ten years from now? What changes will cause us to wince in looking
back from that vantage point? Acknowledging that things are changing more, not less rapidly, we can
assume we will look back and wonder what we were thinking when we recall the supports we are certain
are so forward-thinking today.
How do we articulate a vision for our work if we don’t know where trends will take us? Unfortunately,
we don’t have a crystal ball – but if we did, what would a gaze into those murky depths tell us about the
lives of people with disabilities and the system of services that supports them a dozen years from now?
Here are my guesses – or more accurately, my hopes – for a better future for people with disabilities and
the supports we provide:
People and their families will be less willing to accept standard packages of mediocre
services and will demand quality supports that help them achieve self-selected goals. We will
have abandoned the hat-in-hand attitude and will understand that people with disabilities no more
want or deserve lives that are tedious and lack meaning than would anyone else.
More resources will be available for people living with their families and in their own homes
– rather than requiring a Medicaid Waiver when people choose to live lives of their own design, a
waiver will be required to use public funds for services in traditional settings that we have already
proven to be less effective and less life-affirming.
We will do for people what they want and ask for, rather than what licensing or other
standards say are needed. We will document the information that will be useful for that
person rather than doing for people what needs to be documented. We will keep in mind that
Martin Luther King, Jr. said, “I have a dream.” He did not say, “I have an annual plan, a bunch of
uninspired quarterly goals, and a three-pound pile of paper that keeps track of it all.”
We will realize that you can’t give what you don’t get – we will stop expecting staff to treat the
people they support as valued, important participants who have impact, within organizations that
offer staff so little of the same.
Society will be as unwilling to tolerate the abusive treatment of people with disabilities as
they are the treatment of others. If information became known about substandard treatment for
people with disabilities, the public would rise up with the same energy and outrage as when abuses
of prisoners at Guantanamo and Abu Ghraib became public.
We will offer an array of supports that are responsive to what people want … not a support
system that still contains relics of old models just because it is hard to find the momentum to rid
ourselves of inherently controlling and coercive approaches and not a support system that exists
because it fits with the way funding is provided. In architecture there is a saying, “Form Follows
Function.” It means that structures are designed based on the way they will be used. In our field
the influencing principle has been “Form Follows Funding.” Do we think opening another group
home is a good idea? No, but we’ll do it anyway if funds are available. We will rid ourselves of
the ball-and-chain of traditional funding streams and celebrate when the ‘form’ of supports is
directly responsive to the needs and desires of the person requesting those supports.
We will pay people who work in this field salaries that reflect the value that we place on this
kind of work. People will not need to work in settings that place less value on the people
receiving support, in order to receive salaries that would appear to reflect more value on staff.
It will be recognized that institutions and other highly controlled congregate settings are not
good for people and they will become a thing of the past. We will once-and-for-all give up on
the alluring concept of preparing people to live and work in the real world by providing training in
“unreal” settings. We will similarly abandon the readiness model – we denigrate people when we
demand that they demonstrate readiness before we will “allow” them to move on.
We will finally figure out that it is not only unethical but downright illogical to respond to
people’s desperate attempts to assert a degree of control over their lives by responding with
efforts to impose greater and greater amounts of power over them.
We will recognize that loneliness may be the most debilitating disability of all and we’ll
figure out ways to support our communities to embrace all of their members. As Norm Kunc
reminds us, no one should have to earn the right to belong. We will recognize that people
shouldn’t have to be like each other to be with each other1.
We will train and develop professionals to become leaders who understand how to use their
talents and gifts to help people with intellectual and developmental disabilities achieve their
dreams, not the dreams and ideas of other … and this will be more rewarding to professionals
than telling people what is wrong with them and prescribing a program to “fix” them.
We will recognize that quality of life has a whole lot more to do with personal relationships
and a sense of community than it does the ability to fold laundry, balance a checkbook or set
a proper table. We will acknowledge that the promotion of choice and control needs to
supersede all else.
We will take a page from Copernicus’s book. Copernicus asserted, contrary to what the world
knew to be true, that it was the sun, not the earth that is at the center of the universe. The heart of
our work will be in helping people assume their rightful place at the hub of their own universes
and supporting the discovery of their own power that awaits them there.
Nancy Weiss is the Co-Director of the National Leadership Consortium on Developmental Disabilities at
the University of Delaware (www.nlcdd.org). She is the former Executive Director of TASH, an
international disability advocacy association. Ms. Weiss has worked in the disability field for over thirty
years. The consistent theme of her work has been the promotion of disability supports that assure
communities, schools, and work places that offer individuals with disabilities access to lives of meaning
and impact. She can be reached at nweiss@udel.edu .
This article was originally published in the Spring issue of HopeNews, a publication of Hope House
Foundation (www.hope-house.org)
Happy Holidays
It has been a year since I have posted to my blog and would like to catch you up on my daughters progress. She will be graduating this June from High School and will have had work experience under her belt to persue a job after graduation.
She is doing very well socially. She still has some issues but for the most part is socializing and making friends in school. I am still seeking outlets for her on her spare time for socialization. I would like to see her persue a crafting class for disabled young adults and perhaps a cooking class as well. My goals remain the same for her.....to keep her occupied and active after graduation and beyond. I am working towards getting an apartment for her in the years to come, but that will all depend on the financing I can get help with through the state and local levels. I certainly cannot afford it on my own.
Saturday, December 5, 2009
Making strides
I am so very proud of the young lady my daughter has become. She is in a job coaching program through school and doing very well in volunteer positions at a local hospital. Still have my sites set on starting an apartment or home for her and two other young women so that she can live independently from me with the help of aides. Time is ticking away and I see her graduation in 2011 fast approaching.
I continue to navigate the system so I can have things in order for her graduation. I would like to see her have a part time job prior to graduation, so that she can fill her days. I would then like to have her do volunteer work on some days and have time for some social activities. This would need to be done with the help of aides.
She is enjoying her special needs cheerleading and I am looking forward to the compititions coming up in January. Becky is enjoying the cheerleading and making new friends. May all of you have a blessed holiday season.
I continue to navigate the system so I can have things in order for her graduation. I would like to see her have a part time job prior to graduation, so that she can fill her days. I would then like to have her do volunteer work on some days and have time for some social activities. This would need to be done with the help of aides.
She is enjoying her special needs cheerleading and I am looking forward to the compititions coming up in January. Becky is enjoying the cheerleading and making new friends. May all of you have a blessed holiday season.
Friday, November 6, 2009
November 2009
Hello all. Well, my child care provider bailed on me for the month of November and I am now seeking someone to be with the children when I am away on flights.
I have faith something will come through for me, but it is a process to interview and screen individuals.
Becky is now 20 and doing well in her work program through the high school. She enjoys work and most days is ready to go early in the morning. She does have times where she can become very lazy and refuses to shower, get up or even change clothes unless prodded!! It is very frustrating. She does this mostly when I am away for work and the child care providers don't seem to know how to deal with it.
Still seeking other young adult women who want to share friendships with Becky to get her socializing more and have a circle of friends.
Baby steps.....I must remember.
I have faith something will come through for me, but it is a process to interview and screen individuals.
Becky is now 20 and doing well in her work program through the high school. She enjoys work and most days is ready to go early in the morning. She does have times where she can become very lazy and refuses to shower, get up or even change clothes unless prodded!! It is very frustrating. She does this mostly when I am away for work and the child care providers don't seem to know how to deal with it.
Still seeking other young adult women who want to share friendships with Becky to get her socializing more and have a circle of friends.
Baby steps.....I must remember.
Friday, September 11, 2009
Turning 20
OK, Becky will turn 20 years old this Sunday. I am very proud of the young lady she has become. She is still very immature in many ways. She is Hannah Montana biggest fan! She started with a special needs cheerleading squad tonight and is thrilled to be in a team. She struggles with her speech at times and does not grasp many concepts, but is certainly joyful and happy most of the time.
I am blessed to have her in my life.
I am blessed to have her in my life.
Tuesday, September 1, 2009
Baby Steps
Becky will be turning 20 in a few weeks and it is a big accomplishment. I am taking things day by day and working towards her future.
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