Press release submitted by Tami S Seitz 3/15/10 (Excerpted)
(http://qconline.com/archives/qco/display.php?id=483980)
MOLINE, IL:
"Alzheimer's disease is increasing among persons with developmental disabilities, particularly those with Down Syndrome. It must be considered a terminal condition that presents numerous challenges to provider organizations, families and friends of those who are affected" explains WIU Special Education Professor Don Healy.
An educational seminar sponsored by the Alzheimer's Association–Greater Iowa and Illinois Chapters and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities will be held at the Western Illinois University-Quad Cities campus Wednesday, March 24. Cost to attend the morning session is $30, while there is no charge for the afternoon session. CEUs (3.5) in continuing nurse education are available for an additional $10. The event, co-hosted by the University of Illinois, Chicago, is part of The Professional Training Institute 2010 Programs.To register, call (847) 933-2413.
Tuesday, March 16, 2010
From Mainstreaming to Specialty School?
Could this proposal have merit?
By Carl Orth | The Suncoast News NEW CHARTER SCHOOL (excerpts)
Published: March 6, 2010
HUDSON - Potential is a terrible thing to waste. So Emile Laurino hopes his concept for a new charter school will go to the head of the class. Families are looking for a different approach to education for their children with developmental disabilities, according to an "action plan" for the charter school. " They want something different than the traditional classroom," Laurino explained in the statement. "Once they graduate from school they want to go to work; they want to provide service and help others; they want to be an integral part of their community."
Laurino, the chief executive officer for the Center for Independence in Hudson, believes such a school could cater to teens and young adults with developmental disabilities ages 16 to 22. "Young adults preparing themselves to go out into the world of work" is how Laurino sums up the mission of the proposed educational facility "I'm hearing more and more" the need exists to fill this educational void", Laurino said.
"If enough people show an interest, the Center for Independence would work toward setting up the specialized school as a separate nonprofit corporation with its own board of directors," Laurino said. As a charter institution, the Center's school would be privately operated, but would be under the supervision of the Pasco County School District. Laurino, his staff and board members of the Center for Independence already belong to many community groups, including Seven Springs Rotary Club and Chambers of Commerce. So they might be able to draw upon local resources.
The charter school motto could become "Everyone Has the Right to Know All They Can Know and Be All They Can Be," the action plan concludes.
What do you think?
By Carl Orth | The Suncoast News NEW CHARTER SCHOOL (excerpts)
Published: March 6, 2010
HUDSON - Potential is a terrible thing to waste. So Emile Laurino hopes his concept for a new charter school will go to the head of the class. Families are looking for a different approach to education for their children with developmental disabilities, according to an "action plan" for the charter school. " They want something different than the traditional classroom," Laurino explained in the statement. "Once they graduate from school they want to go to work; they want to provide service and help others; they want to be an integral part of their community."
Laurino, the chief executive officer for the Center for Independence in Hudson, believes such a school could cater to teens and young adults with developmental disabilities ages 16 to 22. "Young adults preparing themselves to go out into the world of work" is how Laurino sums up the mission of the proposed educational facility "I'm hearing more and more" the need exists to fill this educational void", Laurino said.
"If enough people show an interest, the Center for Independence would work toward setting up the specialized school as a separate nonprofit corporation with its own board of directors," Laurino said. As a charter institution, the Center's school would be privately operated, but would be under the supervision of the Pasco County School District. Laurino, his staff and board members of the Center for Independence already belong to many community groups, including Seven Springs Rotary Club and Chambers of Commerce. So they might be able to draw upon local resources.
The charter school motto could become "Everyone Has the Right to Know All They Can Know and Be All They Can Be," the action plan concludes.
What do you think?
Sunday, March 14, 2010
Expanding Persective
Recently, I started this blog, hoping that conversation among people with their differing needs & experiences would lead to mutual caring & support &, eventually, to mutual, creative solutions to the problems we face.
Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.
Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.
This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.
The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.
A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.
And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.
When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.
I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.
As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.
I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia
Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.
Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.
This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.
The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.
A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.
And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.
When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.
I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.
As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.
I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia
Thursday, March 11, 2010
We All Belong!
"He drew a circle that left me out,
heretic, rebel, a thing to flout;
but Love and I had the wit to win;
we drew a circle that took him in."
This verse comes back to me from childhood. I wish I knew to whom the authorship credit belongs.
Just now, it seems to fit perfectly the strategy that those who need RHCs are called upon to adopt.
One of ARC's and the DDC's newest initiatives is "We All Belong" They make it clear that what they mean is that all people with dd belong at home or in their local community, "not in an institution." "WE ALL BELONG!" is a wonderful statement which SHOULD include everyone, no matter where they live: in an RHC, in the family home, in a group home, in an apartment or a nursing home.
Lets embrace INCLUSIVITY TO THE MAX! Every bit as much as universities, hospitals, schools, senior centers, churches, nursing homes, group homes, intensive tenant supported housing, adult family homes, boarding houses and families that live together are part of the community, so are RHCS and the people who live in them. WE ALL BELONG! Lets sing it out and celebrate! ........Saskia
A Dose of Sanity For SB6182
Yesterday, some much needed sanity was added to SB6182 by senators who understand the importance of the role that RHCs play and who support fiscal accountability & even-handedness in making law, as well as absence of conflict of interest. Gold stars for Senators Schoesler, King, Honeford, Roach and Sheldon!
Saskia
Wednesday, March 10, 2010
RHC Closures=Jail
Here is still another lucid argument & plea by the mother of a person with autism. Having recently lived in the "community," her son now is in an RHC." One can readily understand his family's strong support for retaining them.
"This is my family's story if Fircrest is closed:
We just barely survived Fodor Homes and the stress of the closure. Our severely autistic son, who can be violent, came home to live with us; and it put me into the cardiac care unit at Virginia Mason for one week. We had to pay, out of pocket, six thousand dollars for one month for his respite care. Nobody even offered to help us.
If we build up services too fast in the community we will be repeating another Fodor Homes scenario. Look at the mess the adult homes are in! Didn’t we learn this the last time? Why are we going to do it again to severely autistic people and their families? Haven’t we suffered enough already? Our kids are autistic, this should NOT be a criminal offense nor should it be a reason to toss our kids out of medical support living situations into the “community” where these medical and behavioral supports do NOT exist.
Once again, we are repeating history. We still see, everyday, the results of state closure of Mental Hospitals that has resulted in homelessness for millions of mentally ill people. Are we going to do the same thing? Are we now going to make autistic people the new homeless? We do not have the proper services outside the RHCs to care for many with severe autism, so are we going to ignore the problems and solutions. Just like we did the mentally ill and veterans, so that we can save a few bucks?
My son should not be thrown onto the street or into the justice system JUST BECAUSE HE IS AUTISTIC! Are we going to become the state known for jailing it’s autistic citizens? Yet this is EXACTLY what we are doing. Closing the RHCs will not make severe autism go away, it will just dump these kids, when they hit a crisis, as they do, into a Jail which has no ability to meet their medical needs at all. This is not a fear, it is a CURRENT REALITY.
If Fircrest is closed it will put my son in danger of the three strikes law just because he is profoundly autistic. My son can be aggressive and this is common for those who are non-verbal autistic. My son does not understand that it is against the law to assault. In fact, he does not even know what the law is. He can not, at times, control his emotional outbursts. This is why he has the intensive medical and behavioral intervention that the RHCs can provide him. He will more likely be physically and sexually abused in prison. My son will take off all his clothes if he even gets one drop of water on them. What do you think will happen to a handsome, non-verbal, autistic, person in jail when they and take off all their clothes because they are wet? How can we put someone like my son in jail or prison? What does this say about us in Washington State that we punish the innocent? What will the rest of the country think about us? If the safety net of Fircrest is taken away, my son could be sent to prison simply because he is autistic. How would you feel if this was your child?
Jailing autistic people will cost the state and us more money in the long run. One lawsuit that the state lost was for 4 million in Kitsap County because one poor autistic man spent 4 years in jail without being charged just because he hit his mother due to an autistic crisis. We are shutting down our safety net that will prevent many future lawsuits.
Advocates are supposed to help families like mine but they don’t and if Fircrest is closed it will make my life a living hell. It will put my 19-year-old son at risk to go to jail, prison, or become homeless, and it will make him an easy target for emotion, physical, or sexual abuse. This is about money, it is about taking away what my son and other people like him need to survive so that others can have the funds. This is discrimination and it is putting vulnerable autistic people knowingly in harm’s way. Why would any of us think that autistic people are better off in Jail or prison? Why?
Rebecca Sargent"
"This is my family's story if Fircrest is closed:
We just barely survived Fodor Homes and the stress of the closure. Our severely autistic son, who can be violent, came home to live with us; and it put me into the cardiac care unit at Virginia Mason for one week. We had to pay, out of pocket, six thousand dollars for one month for his respite care. Nobody even offered to help us.
If we build up services too fast in the community we will be repeating another Fodor Homes scenario. Look at the mess the adult homes are in! Didn’t we learn this the last time? Why are we going to do it again to severely autistic people and their families? Haven’t we suffered enough already? Our kids are autistic, this should NOT be a criminal offense nor should it be a reason to toss our kids out of medical support living situations into the “community” where these medical and behavioral supports do NOT exist.
Once again, we are repeating history. We still see, everyday, the results of state closure of Mental Hospitals that has resulted in homelessness for millions of mentally ill people. Are we going to do the same thing? Are we now going to make autistic people the new homeless? We do not have the proper services outside the RHCs to care for many with severe autism, so are we going to ignore the problems and solutions. Just like we did the mentally ill and veterans, so that we can save a few bucks?
My son should not be thrown onto the street or into the justice system JUST BECAUSE HE IS AUTISTIC! Are we going to become the state known for jailing it’s autistic citizens? Yet this is EXACTLY what we are doing. Closing the RHCs will not make severe autism go away, it will just dump these kids, when they hit a crisis, as they do, into a Jail which has no ability to meet their medical needs at all. This is not a fear, it is a CURRENT REALITY.
If Fircrest is closed it will put my son in danger of the three strikes law just because he is profoundly autistic. My son can be aggressive and this is common for those who are non-verbal autistic. My son does not understand that it is against the law to assault. In fact, he does not even know what the law is. He can not, at times, control his emotional outbursts. This is why he has the intensive medical and behavioral intervention that the RHCs can provide him. He will more likely be physically and sexually abused in prison. My son will take off all his clothes if he even gets one drop of water on them. What do you think will happen to a handsome, non-verbal, autistic, person in jail when they and take off all their clothes because they are wet? How can we put someone like my son in jail or prison? What does this say about us in Washington State that we punish the innocent? What will the rest of the country think about us? If the safety net of Fircrest is taken away, my son could be sent to prison simply because he is autistic. How would you feel if this was your child?
Jailing autistic people will cost the state and us more money in the long run. One lawsuit that the state lost was for 4 million in Kitsap County because one poor autistic man spent 4 years in jail without being charged just because he hit his mother due to an autistic crisis. We are shutting down our safety net that will prevent many future lawsuits.
Advocates are supposed to help families like mine but they don’t and if Fircrest is closed it will make my life a living hell. It will put my 19-year-old son at risk to go to jail, prison, or become homeless, and it will make him an easy target for emotion, physical, or sexual abuse. This is about money, it is about taking away what my son and other people like him need to survive so that others can have the funds. This is discrimination and it is putting vulnerable autistic people knowingly in harm’s way. Why would any of us think that autistic people are better off in Jail or prison? Why?
Rebecca Sargent"
Tuesday, March 9, 2010
Gram's Letter to Legislators
Here is a grandmother's letter that was recently sent to legislators. I am posting it in the hope that it will help RHC opponents understand the importance of the programs for which they are advocating closure, and too, that along with the "community," RHCs have also sustained severe cuts in revenue, forcing elimination &/or decline of important services.
"Our grandson is in an institution; and he and many others are in desperate need of the care and safety offered to them there. They are residents that are unable to care for themselves mentally and/or physically. Many do not have families or the families that there are can not physically, emotionally or financially provide the care and safety to their loved one. Our grandson was born with severe Downs Syndrome; is aggressively Autistic and mute. He is unable to care for himself personally and requires 24/7 one-on-one care. After 18 years of being cared for at home, he was placed in an institution and has made lots of progress.
In the short time he has been there, there have been many cuts in the budget and the facilities. First it was the closing of the indoor pool and then progressed to the closing or eliminating of the senior citizen center; infirmary and outside activities. Recently the cafeteria has been closed and food service to the units has been eliminated on weekends. Our grandson and others have had their caregivers reduced from two caregivers for each resident to one caregiver to two or three residents. You can really see how this has affected him and how he has regressed, recently, as I am sure is true with many more of the others. The facilities have suffered severe cuts to their budget already and should not suffer anymore.
Other areas have closed their facilities forcing residents like our grandson into group homes. Residents like him could survive BUT would not be able to function properly. They would have to be heavily drugged and kept under lock and key. These facilities, either funded group homes or private ones, can not offer the educated 24/7 caregivers, daily medical monitoring or the safety that is needed.
We also have to LOOK AHEAD to the fact that when these programs are found to not be working or can not get adequate funding, or in the case of private ones they are not making a profit and have to close, the residents will be left with no place at all. THEN WHAT? We have to look ahead and not just act for the moment.
DON’T SACRIFICE THE RESIDENTS TO BALANCE THE BUDGET. BUT MAKE CUTS ELSEWHERE.
Please rule with your hearts and not your budget. All those like my grandson desperately need our help to be safe, healthy and in the best of conditions possible. Their families also need to have the peace of mind knowing their loved one is safe, healthy, cared for and as happy as possible. Please do NOT eliminate or cut the budgets and funding of these institutions.
Respectfully,
"Gram" Donna Evans
(published with the author's permission)
"Our grandson is in an institution; and he and many others are in desperate need of the care and safety offered to them there. They are residents that are unable to care for themselves mentally and/or physically. Many do not have families or the families that there are can not physically, emotionally or financially provide the care and safety to their loved one. Our grandson was born with severe Downs Syndrome; is aggressively Autistic and mute. He is unable to care for himself personally and requires 24/7 one-on-one care. After 18 years of being cared for at home, he was placed in an institution and has made lots of progress.
In the short time he has been there, there have been many cuts in the budget and the facilities. First it was the closing of the indoor pool and then progressed to the closing or eliminating of the senior citizen center; infirmary and outside activities. Recently the cafeteria has been closed and food service to the units has been eliminated on weekends. Our grandson and others have had their caregivers reduced from two caregivers for each resident to one caregiver to two or three residents. You can really see how this has affected him and how he has regressed, recently, as I am sure is true with many more of the others. The facilities have suffered severe cuts to their budget already and should not suffer anymore.
Other areas have closed their facilities forcing residents like our grandson into group homes. Residents like him could survive BUT would not be able to function properly. They would have to be heavily drugged and kept under lock and key. These facilities, either funded group homes or private ones, can not offer the educated 24/7 caregivers, daily medical monitoring or the safety that is needed.
We also have to LOOK AHEAD to the fact that when these programs are found to not be working or can not get adequate funding, or in the case of private ones they are not making a profit and have to close, the residents will be left with no place at all. THEN WHAT? We have to look ahead and not just act for the moment.
DON’T SACRIFICE THE RESIDENTS TO BALANCE THE BUDGET. BUT MAKE CUTS ELSEWHERE.
Please rule with your hearts and not your budget. All those like my grandson desperately need our help to be safe, healthy and in the best of conditions possible. Their families also need to have the peace of mind knowing their loved one is safe, healthy, cared for and as happy as possible. Please do NOT eliminate or cut the budgets and funding of these institutions.
Respectfully,
"Gram" Donna Evans
(published with the author's permission)
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