Tour Operators
At http://www.disabledtravelers.com/tour_operators.htm they say:
"There are many different tour operators that offer accessible travel & tours. Some specialize in cruises, safaris, scuba diving, travel with service dogs, and group travel, while others can arrange a wide variety of tours for individuals or groups. Many U.S. based tour operators offer trips around the country as well as Europe, Australia, U.K., and other parts of the world. If you know where you want to go, then your search for a tour should be easy. However, if you're unsure about where you want to go, then you may have a hard time picking just one! We have done our best to find every tour operator offering accessible tours. Check Adventure Travel for more options and don't forget to do some research using our access guides and message boards."
Copy and Paste the URL and visit this site for LOTS of tour operators who can provide specialized assistance to disabled individuals who would like to travel. This website is great! It highlights products that can be purchased to make travel easier on disabled people. It lists tour operators who can take people on real adventure vacations who might not have had access to that kind of experience in the past.
Tuesday, May 10, 2011
Thinking About Vacation? Want to Travel?
I have copied this article for you. I had no idea such a service existed and I think it is very interesting!
Trips Inc. in the media
Barrier Buster: Company Shows The World To Developmentally Disabled Adults
by Joe Harwood
The Register-Guard
January 4, 2004
Several years ago, leading a tour group of four in London, Jim Peterson spied a sign in a store window advertising five tickets to the evening's Eric Clapton concert at Prince Albert Hall.
Peterson immediately bought the tickets. "I took it as a sign from God that there were five tickets and five of us," he said.
Among Peterson's four developmentally disabled charges was a paraplegic man in a wheelchair.
A Trips Inc. group tests the Elk Lake waters last September. Damon Quade (right) and Justin Hale (rear) served as chaperones on the venture.
Photos: Trips Inc."We had seats close to the stage, but (the ushers) said we couldn't sit there with the wheelchair because of fire regulations," Peterson said. Theater officials worried that in a fire, the wheelchair-bound man wouldn't be able to evacuate quickly.
"So I told them he could get up and walk if there was a fire," Peterson said. "That was a lie, but it was a great show."
Such are the steps Peterson will take to ensure his travel company's special clients receive equal access to adventure and recreation. In the case of Prince Albert Hall, which is not wheelchair accessible, Peterson said he was determined "to use it just like everybody else."
Peterson's Eugene-based firm, Trips Inc. Special Adventures, takes developmentally disabled adults from across the country to destinations worldwide.
Launched in 1991, when Peterson ran four expeditions and served about 70 people, Trips now takes a total of 700 to 750 disabled vacationers on a total of about 40 adventures each year.
Destinations include Mexico, the Bahamas, Greece, Scotland, France and dozens of domestic stops that include Hawaii, Alaska, Disneyland, Nashville, Florida, Las Vegas, San Francisco and a dude ranch near Tucson.
Customers of Trips come with a variety of disabilities, ranging from autism, Down syndrome and cerebral palsy to blindness, assorted physical handicaps and mental retardation.
Peterson is one of a handful of for-profit entrepreneurs nationwide who specialize in this work. Demand has increased as a growing number of families and other advocates have pushed to bring fun into the lives of special-needs people.
Peterson's company has grown to the point where it now has six full-time paid staff, and uses 200 trip chaperons from around the country.
The chaperoning can be demanding. Some clients live in group homes and need 24-hour care.
And the vacation packages are spendy. An annual four-day Christmas gathering in Portland runs $945; a nine-day Oahu vacation costs $2,645; five days in Disneyland can be had for $1,590; and 10 days in Greece has a $3,395 price tag.
The price includes airfare, lodging, meals and entertainment. The ratio of travelers to chaperons runs 3-to-1 or 4-to-1. That small group supervision - which includes dispensing medications and other personal care - plus the multitude of safety provisions Peterson insists upon, drive the price.
Trips Inc. travelers and staff members visited Paris last June to see the Eiffel Tower, Euro Disney and the Louvre.
Photos: Trips Inc.
Still, Peterson said demand outstrips the trips he can supply.
It's not uncommon for the 20 to 30 slots available for a summer camping expedition in Central Oregon to be full six months in advance, said Rhonda Reed, travel coordinator for Trips. On those outdoor expeditions, the chaperone to traveler ratio is 1-to-1 or 1-to-2 for safety reasons, Peterson said.
Limited Opportunities
Peterson started the business a decade after failing to find adequate vacation opportunities for a disabled foster child in his care.
"I found a lot of camps, but what about going to San Francisco for a baseball game?" he said. "I thought about starting my own travel service, and 10 years later I did."
Peterson's personality drives the Trips paid staff. His philosophy is straightforward: Special needs folks need vacations like the rest of us, and the best way to educate the world about the disabled is to take them out into the world to recreate.
"I want the perception out there that we aren't all that different," he said. "People with developmental disabilities aren't made of glass."
Monica Venice is proof of that. Next week, the 38-year-old Cottage Grove woman with Down syndrome will embark on her fifth Trips vacation - this time on a cruise to the Bahamas.
"She usually does one every year," said Monica's mother, Becky Venice, noting that the journeys give her "very independent" daughter the incentive to work at McDonald's and save for traveling.
"It is so thrilling for her to have the opportunity to do a trip like this without Mom and Dad along," Becky Venice said. "Trips gives her as much freedom to be as independent as she can be."
Monica, who has been to Branson, Mo., Disneyworld, Hawaii and Mexico with Trips, said her most memorable venture thus far is the jaunt to Hawaii when she and her group swam with friendly marine mammals at the Dolphin Quest facility. "I kissed a dolphin," she said, giggling.
Letting Go of Kids
Some parents and guardians of special needs people tend to be overprotective and dismiss the supervised vacations offered by Trips and other similar firms, Becky Venice said.
"I've tried to talk it up to other parents to let their kids do this, but it's hard for them to put their kids in the hands of strangers," she said.
Janine Nilsen found Trips when she started looking for an organization for her son, Eric, to travel with after he graduated from Cottage Grove High School. Eric Nilsen, 29, has Down syndrome, and now works in the high school cafeteria.
"It's important for parents of kids with special needs to let them travel," Janine Nelson said. "These kids need real experiences to grow."
Nilsen said the tour groups are a chance for her son to be an ambassador for the special needs community. "To show the world they are not monsters," she said.
Nilsen recounts a vacation Eric took to Hawaii, and he and his group stopped at an Oahu bar. "A group of Japanese businessmen walked in, looked at them and were taken aback," she said. "Eric walked up to them and said 'Hi' and that melted the ice instantly."
Venice maintains she wasn't nervous when Monica took her first vacation without parents. She's known Peterson for almost 30 years, dating back to when both were volunteers for Special Olympics.
"He is such a natural with the population," Venice said. "He just connects with these guys and they love him."
Peterson, who has a master's degree in special education, said the vacations his company offers are the only chance for many disabled people to break their sometimes regimented routines.
"Traveling improves their confidence," he said. "They are adults, so let's get them out there to see the world."
Details, Details, Details
Operating out of a two-story house on West Sixth Avenue in Eugene, the Trips staff plans the minute details of each adventure.
Aside from plane tickets, there are hotel room assignments, special diets and accommodations, instructions for medications, traveler profiles and the lining up of chaperons.
Reed, the travel coordinator and a licensed travel agent, puts it all together, Peterson said.
"We had a trip to Orlando (Fla.) once where we had people coming from 16 different airports," Reed said. "That was stressful."
Peterson insists that all staff members, even the office manager, take at least one trip "so they understand how important their jobs are."
Reed for example, has made several trips to Scotland and France. Tour leaders are also given flexibility to veer off the planned schedule to accommodate different interests.
"We set the itinerary, but they aren't canned trips," Peterson said. "We want people to experience everything."
Reed last June traveled with a group to Paris, and had to make some minor schedule changes. "They liked the Louvre so much they wanted to go back, so we did," she said. "If they don't like museums, I have to find something different for them to enjoy."
Peterson relies on paid group leaders and a network of 200 chaperons to keep his travelers safe. Chaperons, from a variety of backgrounds, are a mix of paid staff and volunteers. For the unpaid, Trips covers the costs, such as airfare, lodging and meals.
A special education teacher in Maryland makes a point of volunteering for one trip a year, Peterson said, while a Wyoming woman travels with Trips as many as 10 times a year.
"The only way it works is if I've got good chaperons," Peterson said, adding that all are thoroughly vetted, including background checks and interviews to screen their disposition and attitude.
Adam Gratch, a program supervisor for the Arc of Multnomah County, has chaperoned seven trips and is slated to head to Nashville in March.
"It's an incredible opportunity," he said. "You get to meet new friends and have new experiences."
Gratch said he appreciates Trips because the firm takes disabled folks to places they would never see on their own.
"They make connections that last well after the trip has ended," Gratch said. "There's a lot of learning that goes on."
Peterson said four couples who met on the trips have married.
Screening clients
Not all folks with developmental disabilities are fit for travel. Peterson requires each to submit a profile, and makes sure a person's social skills will fit with any given group. Formerly a director for a group home for the developmentally disabled, Peterson scrutinizes each profile for any disqualifying issues.
"Our biggest concern is safety. We're not coming at this from a travel agency perspective," he said. "If there are medical concerns that we can't handle, we'll have to say no, maybe another trip at another time."
The business has flattened out since the Sept. 11 terrorist attacks - mirroring the national travel atmosphere - but remains profitable, Peterson said. "This is something that will not make you rich," he added.
Those who know Peterson said he operates Trips out of a deep affection for the disabled. "He loves the population," Venice said. "And his enthusiasm and demeanor rubs off on those people he hires."
Peterson said he loves the clients and their sheer joy in a recreational setting.
"If I had the chance to do it for another group, I wouldn't," he said. "These guys don't complain about the weather. They are simply grateful."
Trips Inc. Special Adventures
Business: Travel agency that caters exclusively to developmentally disabled adults. Conducts roughly 40 trips a year and serves as many as 750 clients a year.
Owner: Jim Peterson
Employees: Six paid staff plus a volunteer chaperon force of 200
Founded: 1991
Headquarters: Eugene
Copyright © 2004, The Register Guard
Reprinted with permission
Trips Inc. in the media
Barrier Buster: Company Shows The World To Developmentally Disabled Adults
by Joe Harwood
The Register-Guard
January 4, 2004
Several years ago, leading a tour group of four in London, Jim Peterson spied a sign in a store window advertising five tickets to the evening's Eric Clapton concert at Prince Albert Hall.
Peterson immediately bought the tickets. "I took it as a sign from God that there were five tickets and five of us," he said.
Among Peterson's four developmentally disabled charges was a paraplegic man in a wheelchair.
A Trips Inc. group tests the Elk Lake waters last September. Damon Quade (right) and Justin Hale (rear) served as chaperones on the venture.
Photos: Trips Inc."We had seats close to the stage, but (the ushers) said we couldn't sit there with the wheelchair because of fire regulations," Peterson said. Theater officials worried that in a fire, the wheelchair-bound man wouldn't be able to evacuate quickly.
"So I told them he could get up and walk if there was a fire," Peterson said. "That was a lie, but it was a great show."
Such are the steps Peterson will take to ensure his travel company's special clients receive equal access to adventure and recreation. In the case of Prince Albert Hall, which is not wheelchair accessible, Peterson said he was determined "to use it just like everybody else."
Peterson's Eugene-based firm, Trips Inc. Special Adventures, takes developmentally disabled adults from across the country to destinations worldwide.
Launched in 1991, when Peterson ran four expeditions and served about 70 people, Trips now takes a total of 700 to 750 disabled vacationers on a total of about 40 adventures each year.
Destinations include Mexico, the Bahamas, Greece, Scotland, France and dozens of domestic stops that include Hawaii, Alaska, Disneyland, Nashville, Florida, Las Vegas, San Francisco and a dude ranch near Tucson.
Customers of Trips come with a variety of disabilities, ranging from autism, Down syndrome and cerebral palsy to blindness, assorted physical handicaps and mental retardation.
Peterson is one of a handful of for-profit entrepreneurs nationwide who specialize in this work. Demand has increased as a growing number of families and other advocates have pushed to bring fun into the lives of special-needs people.
Peterson's company has grown to the point where it now has six full-time paid staff, and uses 200 trip chaperons from around the country.
The chaperoning can be demanding. Some clients live in group homes and need 24-hour care.
And the vacation packages are spendy. An annual four-day Christmas gathering in Portland runs $945; a nine-day Oahu vacation costs $2,645; five days in Disneyland can be had for $1,590; and 10 days in Greece has a $3,395 price tag.
The price includes airfare, lodging, meals and entertainment. The ratio of travelers to chaperons runs 3-to-1 or 4-to-1. That small group supervision - which includes dispensing medications and other personal care - plus the multitude of safety provisions Peterson insists upon, drive the price.
Trips Inc. travelers and staff members visited Paris last June to see the Eiffel Tower, Euro Disney and the Louvre.
Photos: Trips Inc.
Still, Peterson said demand outstrips the trips he can supply.
It's not uncommon for the 20 to 30 slots available for a summer camping expedition in Central Oregon to be full six months in advance, said Rhonda Reed, travel coordinator for Trips. On those outdoor expeditions, the chaperone to traveler ratio is 1-to-1 or 1-to-2 for safety reasons, Peterson said.
Limited Opportunities
Peterson started the business a decade after failing to find adequate vacation opportunities for a disabled foster child in his care.
"I found a lot of camps, but what about going to San Francisco for a baseball game?" he said. "I thought about starting my own travel service, and 10 years later I did."
Peterson's personality drives the Trips paid staff. His philosophy is straightforward: Special needs folks need vacations like the rest of us, and the best way to educate the world about the disabled is to take them out into the world to recreate.
"I want the perception out there that we aren't all that different," he said. "People with developmental disabilities aren't made of glass."
Monica Venice is proof of that. Next week, the 38-year-old Cottage Grove woman with Down syndrome will embark on her fifth Trips vacation - this time on a cruise to the Bahamas.
"She usually does one every year," said Monica's mother, Becky Venice, noting that the journeys give her "very independent" daughter the incentive to work at McDonald's and save for traveling.
"It is so thrilling for her to have the opportunity to do a trip like this without Mom and Dad along," Becky Venice said. "Trips gives her as much freedom to be as independent as she can be."
Monica, who has been to Branson, Mo., Disneyworld, Hawaii and Mexico with Trips, said her most memorable venture thus far is the jaunt to Hawaii when she and her group swam with friendly marine mammals at the Dolphin Quest facility. "I kissed a dolphin," she said, giggling.
Letting Go of Kids
Some parents and guardians of special needs people tend to be overprotective and dismiss the supervised vacations offered by Trips and other similar firms, Becky Venice said.
"I've tried to talk it up to other parents to let their kids do this, but it's hard for them to put their kids in the hands of strangers," she said.
Janine Nilsen found Trips when she started looking for an organization for her son, Eric, to travel with after he graduated from Cottage Grove High School. Eric Nilsen, 29, has Down syndrome, and now works in the high school cafeteria.
"It's important for parents of kids with special needs to let them travel," Janine Nelson said. "These kids need real experiences to grow."
Nilsen said the tour groups are a chance for her son to be an ambassador for the special needs community. "To show the world they are not monsters," she said.
Nilsen recounts a vacation Eric took to Hawaii, and he and his group stopped at an Oahu bar. "A group of Japanese businessmen walked in, looked at them and were taken aback," she said. "Eric walked up to them and said 'Hi' and that melted the ice instantly."
Venice maintains she wasn't nervous when Monica took her first vacation without parents. She's known Peterson for almost 30 years, dating back to when both were volunteers for Special Olympics.
"He is such a natural with the population," Venice said. "He just connects with these guys and they love him."
Peterson, who has a master's degree in special education, said the vacations his company offers are the only chance for many disabled people to break their sometimes regimented routines.
"Traveling improves their confidence," he said. "They are adults, so let's get them out there to see the world."
Details, Details, Details
Operating out of a two-story house on West Sixth Avenue in Eugene, the Trips staff plans the minute details of each adventure.
Aside from plane tickets, there are hotel room assignments, special diets and accommodations, instructions for medications, traveler profiles and the lining up of chaperons.
Reed, the travel coordinator and a licensed travel agent, puts it all together, Peterson said.
"We had a trip to Orlando (Fla.) once where we had people coming from 16 different airports," Reed said. "That was stressful."
Peterson insists that all staff members, even the office manager, take at least one trip "so they understand how important their jobs are."
Reed for example, has made several trips to Scotland and France. Tour leaders are also given flexibility to veer off the planned schedule to accommodate different interests.
"We set the itinerary, but they aren't canned trips," Peterson said. "We want people to experience everything."
Reed last June traveled with a group to Paris, and had to make some minor schedule changes. "They liked the Louvre so much they wanted to go back, so we did," she said. "If they don't like museums, I have to find something different for them to enjoy."
Peterson relies on paid group leaders and a network of 200 chaperons to keep his travelers safe. Chaperons, from a variety of backgrounds, are a mix of paid staff and volunteers. For the unpaid, Trips covers the costs, such as airfare, lodging and meals.
A special education teacher in Maryland makes a point of volunteering for one trip a year, Peterson said, while a Wyoming woman travels with Trips as many as 10 times a year.
"The only way it works is if I've got good chaperons," Peterson said, adding that all are thoroughly vetted, including background checks and interviews to screen their disposition and attitude.
Adam Gratch, a program supervisor for the Arc of Multnomah County, has chaperoned seven trips and is slated to head to Nashville in March.
"It's an incredible opportunity," he said. "You get to meet new friends and have new experiences."
Gratch said he appreciates Trips because the firm takes disabled folks to places they would never see on their own.
"They make connections that last well after the trip has ended," Gratch said. "There's a lot of learning that goes on."
Peterson said four couples who met on the trips have married.
Screening clients
Not all folks with developmental disabilities are fit for travel. Peterson requires each to submit a profile, and makes sure a person's social skills will fit with any given group. Formerly a director for a group home for the developmentally disabled, Peterson scrutinizes each profile for any disqualifying issues.
"Our biggest concern is safety. We're not coming at this from a travel agency perspective," he said. "If there are medical concerns that we can't handle, we'll have to say no, maybe another trip at another time."
The business has flattened out since the Sept. 11 terrorist attacks - mirroring the national travel atmosphere - but remains profitable, Peterson said. "This is something that will not make you rich," he added.
Those who know Peterson said he operates Trips out of a deep affection for the disabled. "He loves the population," Venice said. "And his enthusiasm and demeanor rubs off on those people he hires."
Peterson said he loves the clients and their sheer joy in a recreational setting.
"If I had the chance to do it for another group, I wouldn't," he said. "These guys don't complain about the weather. They are simply grateful."
Trips Inc. Special Adventures
Business: Travel agency that caters exclusively to developmentally disabled adults. Conducts roughly 40 trips a year and serves as many as 750 clients a year.
Owner: Jim Peterson
Employees: Six paid staff plus a volunteer chaperon force of 200
Founded: 1991
Headquarters: Eugene
Copyright © 2004, The Register Guard
Reprinted with permission
Monday, May 2, 2011
More Exciting Research Re: Treatment of Intellectual Disability
Drugs Could Be Game-Changer For Intellectual Disability
By MICHELLE DIAMENT
May 2, 2011 Text Size A A
An antibiotic regularly used to treat acne and strep throat is one of a handful of drugs that researchers are discovering could alter outcomes for individuals with intellectual disabilities.
For Chase Brown, 14, the medication known as minocycline appeared to make a difference. Since taking the drug, the boy who has fragile X syndrome pays more attention in school, exhibits a greater ability to have back and forth conversation with others and his behavior meltdowns have subsided, his mother says.
The best part: unlike antipsychotics, Chase’s mom says the medication is not sedating her son.
And he isn’t alone. In a small study in which Chase participated, 70 percent of individuals with fragile X responded to minocycline, seeing similar improvements in communication, behavior and learning.
The drug is one of a few undergoing trials currently, which researchers say could ultimately lead to a development once thought impossible: the reversal of intellectual disability. Moreover, if successful, researchers say the medications could also have implications for those with autism and other conditions, reports The Los Angeles Times.
Comment by Sheree:
This article came to me through Disability Scoop, and they provide a link to the original LA Times article, which does mention a side-effect that occurs in some patients, reduced appetite and/or stomach upset. Other articles on this topic mention that the side effects sometimes subside after a few days of use. Some doctors are prescribing this medication off-label at parent's request and many of those have been surveyed about their observations. Many parents reported some improvements, but since it was not a controlled study, it is assumed that their is some placebo effect going on in at least some cases.
The original article also makes reference to a "ray of hope" for those who are born with Down Syndrome.
To read the original article copy and paste this URL
latimes.com/health/la-he-fragile-x-20110501,0,7738702.story
By MICHELLE DIAMENT
May 2, 2011 Text Size A A
An antibiotic regularly used to treat acne and strep throat is one of a handful of drugs that researchers are discovering could alter outcomes for individuals with intellectual disabilities.
For Chase Brown, 14, the medication known as minocycline appeared to make a difference. Since taking the drug, the boy who has fragile X syndrome pays more attention in school, exhibits a greater ability to have back and forth conversation with others and his behavior meltdowns have subsided, his mother says.
The best part: unlike antipsychotics, Chase’s mom says the medication is not sedating her son.
And he isn’t alone. In a small study in which Chase participated, 70 percent of individuals with fragile X responded to minocycline, seeing similar improvements in communication, behavior and learning.
The drug is one of a few undergoing trials currently, which researchers say could ultimately lead to a development once thought impossible: the reversal of intellectual disability. Moreover, if successful, researchers say the medications could also have implications for those with autism and other conditions, reports The Los Angeles Times.
Comment by Sheree:
This article came to me through Disability Scoop, and they provide a link to the original LA Times article, which does mention a side-effect that occurs in some patients, reduced appetite and/or stomach upset. Other articles on this topic mention that the side effects sometimes subside after a few days of use. Some doctors are prescribing this medication off-label at parent's request and many of those have been surveyed about their observations. Many parents reported some improvements, but since it was not a controlled study, it is assumed that their is some placebo effect going on in at least some cases.
The original article also makes reference to a "ray of hope" for those who are born with Down Syndrome.
To read the original article copy and paste this URL
latimes.com/health/la-he-fragile-x-20110501,0,7738702.story
Saturday, April 23, 2011
The Financial Reality for Severely Disabled Adults
On April 25th, PBS aired an interview by Robert MacNeil on the topic of autism. To watch a video clip of the interview or read the transcript, copy and paste this URL :
http://www.pbs.org/newshour/bb/health/jan-june11/autism6wrapup_04-25.html
There were many posted responses to this interview by viewers/readers. The following response struck a nerve with me. This writer describes the true financial situation faced by an adult in this country whose disability is so severe that they have never been able to work. As she says, it is what becomes of our adult children when family are no longer around to help them that is the frightening thing to parents because the financial supports from social security are so small. I have posted her response here because it is very accurate and it is a SHAME.
"RE: The interviewee who said "Let me just give you one example. Dove, my son, is 18. So, now he gets supplemental Social Security income. So, for an autistic person, he gets $634 a month. He would get more, but since -- he would get a little bit more, but since he lives with us, they deduct his rent. ...And so, after I pay for Depends, which are not paid for by Medicaid or Medi-Cal, that is about $400 a month. So, that's really not enough to support a person. Or let alone a person who, in his case, needs help every minute of his life. It's just..."
Get with reality. The MAXIMUM Social Securirty Supplemental Income (SSI) for an individual is $674 a month. SSI is what disabled people get if they have not worked, or not worked enough quarters with a certain level of earnings and not paid into the system, or not worked in the 18 months before they becamse disabled.
That is exactly the same amount that those who have never worked get if they are disabled by mental illness such as schizophrenia or physical conditions (MS, cerebral palsy, head injuries, any kind of injury etc.)
SSI recipients are enrolled in Medicaid and will be in it for life. ANd that means they will have trouble accessing care - particularly specialists. This state stopped paying for eye exams, glasses or dental care. Basically the SSI recipient can have their teeth fall out and then can do without being able to read or see - can't afford eye exams or dentists on that $674 a month.
Our society has decided that those who did not work at all or did not work enough are only worthy to receive that maximum amount of $674 on which to live. And if they get any more money from any source, that amount decreases.
A quadriplegic in a wheelchair since birth or childhood or before they could work who also needs 24/7 help gets the same amount. A lovely and interestings man here in town was diagnosed with schizophrenia in his 3rd year of law school. All he gets is that $674 and out of that he has to pay his rent in a low-income complex, buy food, pay utilities, pay for transportation, clothing and personal care, eye cand dental care, and pay the Medicaid copays in this state. And oh yeah, he gets about $75 in food stamps based upon the formula for calculating benefits. And he is the last of his family. GOod luck on that amount of money.
This is NOT a lack of money for those disabled by autism. It is an endemic issue about the lack of money to allow the severely disabled to even be able to live inside, eat, have light and heat, get glasses and dental care and buy clothing.
70% of the disabled have incomes BELOW federal poverty level - no where near enough to pay the costs of their needs due to their disability. The disabled - disabled for ANY REASON - live in extreme poverty and the US society thinks that is good enough. It is not 'just' autistics."
I hope that this changes in my daughter's lifetime and this appalling situation should be the subject of political action. I look at my own parents who were able to work for 30 years before taking an early retirement, were able to accumulate assets,savings and qualify for a pension from their companies. They would live comfortably, even without social security benefits. Yet, they receive much more per month in social security benefits than their disabled granddaughter, and as a result they can pay for travel 4 months a year in their boat or RV, redecorate their home, and live like they are on vacation for the past 20 years. Isn't there something wrong with this equation that gives more to some who have little or no need for support, while so many others are left at "below poverty levels".
http://www.pbs.org/newshour/bb/health/jan-june11/autism6wrapup_04-25.html
There were many posted responses to this interview by viewers/readers. The following response struck a nerve with me. This writer describes the true financial situation faced by an adult in this country whose disability is so severe that they have never been able to work. As she says, it is what becomes of our adult children when family are no longer around to help them that is the frightening thing to parents because the financial supports from social security are so small. I have posted her response here because it is very accurate and it is a SHAME.
"RE: The interviewee who said "Let me just give you one example. Dove, my son, is 18. So, now he gets supplemental Social Security income. So, for an autistic person, he gets $634 a month. He would get more, but since -- he would get a little bit more, but since he lives with us, they deduct his rent. ...And so, after I pay for Depends, which are not paid for by Medicaid or Medi-Cal, that is about $400 a month. So, that's really not enough to support a person. Or let alone a person who, in his case, needs help every minute of his life. It's just..."
Get with reality. The MAXIMUM Social Securirty Supplemental Income (SSI) for an individual is $674 a month. SSI is what disabled people get if they have not worked, or not worked enough quarters with a certain level of earnings and not paid into the system, or not worked in the 18 months before they becamse disabled.
That is exactly the same amount that those who have never worked get if they are disabled by mental illness such as schizophrenia or physical conditions (MS, cerebral palsy, head injuries, any kind of injury etc.)
SSI recipients are enrolled in Medicaid and will be in it for life. ANd that means they will have trouble accessing care - particularly specialists. This state stopped paying for eye exams, glasses or dental care. Basically the SSI recipient can have their teeth fall out and then can do without being able to read or see - can't afford eye exams or dentists on that $674 a month.
Our society has decided that those who did not work at all or did not work enough are only worthy to receive that maximum amount of $674 on which to live. And if they get any more money from any source, that amount decreases.
A quadriplegic in a wheelchair since birth or childhood or before they could work who also needs 24/7 help gets the same amount. A lovely and interestings man here in town was diagnosed with schizophrenia in his 3rd year of law school. All he gets is that $674 and out of that he has to pay his rent in a low-income complex, buy food, pay utilities, pay for transportation, clothing and personal care, eye cand dental care, and pay the Medicaid copays in this state. And oh yeah, he gets about $75 in food stamps based upon the formula for calculating benefits. And he is the last of his family. GOod luck on that amount of money.
This is NOT a lack of money for those disabled by autism. It is an endemic issue about the lack of money to allow the severely disabled to even be able to live inside, eat, have light and heat, get glasses and dental care and buy clothing.
70% of the disabled have incomes BELOW federal poverty level - no where near enough to pay the costs of their needs due to their disability. The disabled - disabled for ANY REASON - live in extreme poverty and the US society thinks that is good enough. It is not 'just' autistics."
I hope that this changes in my daughter's lifetime and this appalling situation should be the subject of political action. I look at my own parents who were able to work for 30 years before taking an early retirement, were able to accumulate assets,savings and qualify for a pension from their companies. They would live comfortably, even without social security benefits. Yet, they receive much more per month in social security benefits than their disabled granddaughter, and as a result they can pay for travel 4 months a year in their boat or RV, redecorate their home, and live like they are on vacation for the past 20 years. Isn't there something wrong with this equation that gives more to some who have little or no need for support, while so many others are left at "below poverty levels".
Friday, April 1, 2011
Be Aware and Wary
You or a family member is unable to live alone and unassisted, so you look at your alternatives. Read this story and think about the options.
Amid Abuse Concerns, New Group Home Safeguards Unveiled
By SHAUN HEASLEY
March 31, 2011
Weeks after a newspaper investigation uncovered widespread abuse at New York group homes for those with developmental disabilities, state officials are making changes, but advocates say they don’t go far enough.
Under the plans announced Wednesday by the state’s Office for People With Developmental Disabilities, new group home staffers will be required to have a high school diploma and will be subject to psychological and drug testing. Current staff will receive additional training emphasizing “individual respect, dignity and professional ethics,” state officials said.
In addition, the agency will establish a centralized team to oversee abuse and neglect allegations and create a review panel to ensure that disciplinary steps are consistent.
“The protection and quality of care for the developmentally disabled is our highest priority,” said Courtney Burke, acting commissioner of the state disability agency. “The actions we announce today are the critical first steps on the road to improving the protection and quality of care for those we serve.”
The developments come after a New York Times investigation published earlier this month revealed a group home system plagued with cases of abuse rarely brought to the attention of law enforcement. In 2009 alone, The Times identified 13,000 abuse allegations among group home staffers. Police were involved in less than 5 percent of the cases.
Advocates for people with developmental disabilities, however, say the new measures are completely insufficient, pointing out that the state is not taking steps to remove group home workers with a history of abuse.
“To create yet more management teams and bureaucracy will never stop these systemic problems,” said Michael Carey, a disability advocate whose son died in 2007 while in state care.
MORE IN POLITICS »
Copyright © 2011 Disability Scoop, LLC. All Rights Reserved.
Amid Abuse Concerns, New Group Home Safeguards Unveiled
By SHAUN HEASLEY
March 31, 2011
Weeks after a newspaper investigation uncovered widespread abuse at New York group homes for those with developmental disabilities, state officials are making changes, but advocates say they don’t go far enough.
Under the plans announced Wednesday by the state’s Office for People With Developmental Disabilities, new group home staffers will be required to have a high school diploma and will be subject to psychological and drug testing. Current staff will receive additional training emphasizing “individual respect, dignity and professional ethics,” state officials said.
In addition, the agency will establish a centralized team to oversee abuse and neglect allegations and create a review panel to ensure that disciplinary steps are consistent.
“The protection and quality of care for the developmentally disabled is our highest priority,” said Courtney Burke, acting commissioner of the state disability agency. “The actions we announce today are the critical first steps on the road to improving the protection and quality of care for those we serve.”
The developments come after a New York Times investigation published earlier this month revealed a group home system plagued with cases of abuse rarely brought to the attention of law enforcement. In 2009 alone, The Times identified 13,000 abuse allegations among group home staffers. Police were involved in less than 5 percent of the cases.
Advocates for people with developmental disabilities, however, say the new measures are completely insufficient, pointing out that the state is not taking steps to remove group home workers with a history of abuse.
“To create yet more management teams and bureaucracy will never stop these systemic problems,” said Michael Carey, a disability advocate whose son died in 2007 while in state care.
MORE IN POLITICS »
Copyright © 2011 Disability Scoop, LLC. All Rights Reserved.
Program to Support Families and Educators
I came across a website for a program today that could prove useful to families who want help teaching their child new skills at home. It might be useful to educators who work with students on the autism spectrum or who have other developmental disabilities.
Visit this website: http://www.rethinkautism.com/default.aspx
To quote the article about Rethink Autism
"April is Autism Awareness Month. As part of its commitment to the autism community, educational technology company Rethink Autism is helping to educate parents through a new video series on their home page, "Every Day Counts, Everyone Can Help."
Developed by Rethink Autism's clinical team and hosted by Rethink Autism's Director of Research and Training, Dr. Hannah Hoch, the series provides an overview of autism, video examples of early warning signs, and research-based teaching strategies that they can start using immediately.
For parents and educators, Rethink Autism is also extending their one-week free trial to last for the entire month of April. After filling out a brief assessment, parents can gain access to individualized video-based exercises, printable lesson plans, and a complete series of ABA training videos"
Visit this website: http://www.rethinkautism.com/default.aspx
To quote the article about Rethink Autism
"April is Autism Awareness Month. As part of its commitment to the autism community, educational technology company Rethink Autism is helping to educate parents through a new video series on their home page, "Every Day Counts, Everyone Can Help."
Developed by Rethink Autism's clinical team and hosted by Rethink Autism's Director of Research and Training, Dr. Hannah Hoch, the series provides an overview of autism, video examples of early warning signs, and research-based teaching strategies that they can start using immediately.
For parents and educators, Rethink Autism is also extending their one-week free trial to last for the entire month of April. After filling out a brief assessment, parents can gain access to individualized video-based exercises, printable lesson plans, and a complete series of ABA training videos"
Thursday, December 30, 2010
If you have a child that disrobes...
Check out www.ikidsfashion.com for the Wonder Jumper for kids in sizes 2T-Youth6. This company was started by a family with a little boy who has an ASD, and they solved the problem of disrobing for him and now share their solution with other families.
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