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.
Saturday, December 5, 2009
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.
Thursday, August 20, 2009
tired and overwhelmed
Today was not a good day. I do not know how I am going to be able to cope. Dealing with just the day to day challenges with my daughter are difficult enough, but having my ex undermine everything I do is even more difficult.
I try to reach out to family and friends to express my pain and attempt to get some small relief in having them help by taking Becky for an overnight and I do not get a response. It seems people are reluctant or scared of taking on the challenge of her. I understand, as I am living it day in and day out.
God Bless her, she means no harm, but she can be a challenge when she gets cantankerous and anxious. It is very frustrating and I was at my wits end today.
Very painful......must pray....
I try to reach out to family and friends to express my pain and attempt to get some small relief in having them help by taking Becky for an overnight and I do not get a response. It seems people are reluctant or scared of taking on the challenge of her. I understand, as I am living it day in and day out.
God Bless her, she means no harm, but she can be a challenge when she gets cantankerous and anxious. It is very frustrating and I was at my wits end today.
Very painful......must pray....
Friday, August 7, 2009
Central Clearing House for information
Wouldn't it be nice to have a central clearing house in each county for services for our children with Autisim spectrum disorder, or other disabilities??
What a joy it would be not to have to navigate through the maze out there!
What a joy it would be not to have to navigate through the maze out there!
Tuesday, July 7, 2009
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)
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)
Tuesday, June 9, 2009
anybody out there
Sometimes I feel as if I am just venting for myself here. But it is helpful all the same. I met a parent of another special needs child in my daughters class today and see how little some parents know about services that are out there for them and what needs to be done for thier childs future. I get frustrated and want so much to help everyone.
Every day I learn something new. This parent shared with me information about respite care through the Division of Developmental Disabilites. I desperatly need respite for Becky and need more info on this.
Every day I learn something new. This parent shared with me information about respite care through the Division of Developmental Disabilites. I desperatly need respite for Becky and need more info on this.
Monday, June 8, 2009
guilty
Feeling guilty about working so much. I am a single mom with my disabled daughter and another child of 12. Doing it on my own, with very little help from my ex.
I work as a flight attendant for a major airline and it takes me away from home for two to three nights per week at a time. I love my job, have been doing it for 30 years now! But often I feel guilty leaving my kids in the hands of caregivers and not being here for them. I am sure other parents feel this pressure and guilt at times. It just weighs heavy on me at times, given the nature of my job.
Hygiene
Hygiene is a big issue with my disabled daughter. It takes allot of prompting to get her to wash hands, brush teeth, shower, use deodorant and shave. It is time consuming...some days are better than others. It can be exasperating!! She refuses to cut her shoulder length curly hair and it is a rats nest on some days! I think I would have to drag her into the salon kicking and screaming to get it cut, or have her knocked out!!
She pulls her mop of hair up into a ponytail every day, sometimes without even combing it which makes it even worse.....
She pulls her mop of hair up into a ponytail every day, sometimes without even combing it which makes it even worse.....
Wednesday, June 3, 2009
Focused
Trying to focus on the future for my daughter. Would like to get a behaviorist in home to help with issues.. Very expensive. Insurance does not cover that!
Monday, June 1, 2009
Frustrated
Working at home on a second job.....am wrapping my car in advertisements to get paid each month. Can do customer service....anyone out there need an agent to answer customer service e mails. Any buisneses interested? I would answer any customer service emails from my laptop. I would charge per email. A great service considering everyone is using technology in particular internet technology!
Good idea?
Good idea?
Sunday, May 31, 2009
Medicaide eligible? Get Personal Aides...
Did you know that if your child is receiving Medicaid they are eligible for up to 20 hours per of personal aides?
Navigating the system for our disabled young adults
As a parent of a disabled child it has been a process learning the lingo and getting the services needed for my child. As she approaches the transition to adulthood it is even scarier. I have learned many things in my search for services for her and am sure there is more to learn. In creating this blog I was hoping to connect with other parents for more ideas and to share stories and successes.
I am interested in finding other young women out there that will be transitioning into adulthood in the next two years and find suitable housemates for my daughter. I am hoping to utilize the Real Life Choices Program (although it is under change now and is being called something else). This program funds aides for our disabled adults to live outside or in our homes to help them with their daily care and needs.
My hope is to create a place for my daughter to live with one or two other young women and have a social life, volunteer in the community they are in and live their life productively and happily.
Best Wishes......Paula
I am interested in finding other young women out there that will be transitioning into adulthood in the next two years and find suitable housemates for my daughter. I am hoping to utilize the Real Life Choices Program (although it is under change now and is being called something else). This program funds aides for our disabled adults to live outside or in our homes to help them with their daily care and needs.
My hope is to create a place for my daughter to live with one or two other young women and have a social life, volunteer in the community they are in and live their life productively and happily.
Best Wishes......Paula
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