WiiMotes

Were working through the Life Without Limits project quite nicely now. The first shipment of parts arrived. This included the breadboard and Jumper wires (for protoyping), along with our two Wii Remotes. The reason for these is inside is them there is a pc compatible bluetooth controller. We will extract this and use that. I’ve already take apart one remote and prepared it to take out the Bluetooth transceiver. This wasnt hard there were simply four screws on the back which had to be removed, and then the case was pryed off. It was a bit tricky to remove the case without breaking the clips in the front though. The case also had Tri-winged screws holding it together but I was able to remve those using a 2.4X20mm flathead screwdriver as I did not not have a Triwinged screwdriver.

We are still awaiting the arrival of the microcontrollers which im sure will arrive soon.

-Manbir Gulati

New AARP Report Finds that Family Caregivers Provided Care Valued at $450 billion in 2009

AARP recently conducted research on "Valuing the Invaluable: 2011 Update. The Growing Contributions and Costs of Family Caregiving."  The study aimed to quantify in monetary terms the tremendous amount of care and support that family caregivers give to their loved ones.

Family support is critical to remaining in one’s home and in the community, but often comes at substantial costs to caregivers themselves, to their families, and to society.  If family caregivers were no longer available, the economic cost to the U.S. health care and long-term services and supports (LTSS) systems would increase astronomically.
 
Something to think about in light of the looming budget cuts to programs that help older people and people with disabilities remain in their homes.
 
Read the Fact Sheet or the full report.

Don’t Sacrifice People with Disabilities in the Budget Deal

FOR IMMEDIATE RELEASE

United Cerebral Palsy Contacts:
Lauren Cozzi, 202-973-7114, LCozzi@ucp.org
Alicia Kubert Smith, 202-973 7168, akubertsmith@ucp.org

American Association of People with Disabilities Contact:
David Hale: 202-521-4305, dhale@appd.com

Don’t Sacrifice People with Disabilities in the Budget Deal

The majority of Medicaid funds are used for the eight million Americans with disabilities who benefit from the program

Washington, D.C. – July 22, 2011 – As negotiations around the debt ceiling and budget continue, the American Association of People with Disabilities and United Cerebral Palsy urge lawmakers not to sacrifice people with disabilities in the budget deal.

“There are a lot of choices to be made in any final budget deal, but we want elected officials to explain how they would justify tax breaks for corporate jets if they deny a person with a disability a wheelchair,” said Helena Berger, Executive Vice President and Chief Operating Officer of AAPD. “Cuts to Medicaid would slash essential services that make it possible for people with disabilities and their families to be productive and contributing members of their community.  For a person with a disability who wants to work, who wants to get out there and contribute to her community, to be responsible for herself—we can’t say to that person ‘no, this country doesn’t value what you have to offer’.”

“This country makes a commitment to a life of opportunity for every child born today. If that child has a disability, Medicaid is their safety net. By gutting Medicaid, elected officials are betraying their promise not only to those children, but also to American families who rely on that support to be contributing members of society; it becomes an empty promise," said Stephen Bennett, United Cerebral Palsy’s President & Chief Executive Officer.

Individuals and their families who benefit from Medicaid – and who are examples of the millions affected – are available for interview:

  • Anna Libenow of Providence, Rhode Island, who relies on personal assistance paid for by Medicaid that lets her work and volunteer in her community;
  • The Hetrick family of Columbus, Ohio, who depends on Medicaid for assistance for their son Micah, who has Down syndrome, so his mother Sue can go to work and support their family; and
  • Linda and Javi Guzman, who count on Medicaid to provide an aide and life skills training for Javi, while Linda works.

 

These families are real-life examples of the increased cost of not having Medicaid as a safety net. If Medicaid and other entitlements are slashed, Anna Libenow, Sue Hetrick and Linda Guzman aren’t the only Americans who might have to quit their jobs. Millions of other Americans might have to do the same because of lack of supports.

The majority of Medicaid funds are used for the eight million Americans with disabilities who benefit from the program.

Polling shows that the majority of Americans oppose cuts to Medicaid, e.g.: A Washington Post-ABC News Poll found that 69 percent opposed cuts to Medicaid to reduce deficit: http://www.washingtonpost.com/wp-srv/politics/polls/postpoll_04172011.html.

Both organizations are encouraged by President Obama’s latest statement during today’s University of Maryland Town Hall, where he said there are a certain set of equities they are not willing to sacrifice, including core commitments to Medicaid:

27:51 – http://www.c-spanvideo.org/program/PresidentialTownHallMeeting

 “…Now we’re not going to solve the entire debt deficit in the next ten days. So there’s still going to be more work to do after this. What we’re doing is to try to make sure that any deal that we strike protects our core commitments to Medicare and Medicaid recipients, to senior citizens, to veterans. We want to make sure that student loans remain affordable. We want to make sure that poor kids can still get a check up, that food stamps are still available for folks who are desperately in need. We want to make sure that unemployment insurance continues for those who are out there looking for work, so there are going to be a certain set of equities that we’re not willing to sacrifice…”

Learn more about the real life Faces of Medicaid:

Hear their recorded stories:

 

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

About The American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially.  AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national force for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: www.AAPD.com.

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Outline/First Post

Blog Start

What is this blog about?

This blog will be written by me, Manbir Gulati, a tech intern here at UCP, and it’s purpose serves to outline and inform as I along with a few others work through different projects to help disabled individuals for the LIfe without LImits projects.

Projects we hope to work on and blog on here include

  • a pair of glasses to help control electronic devices with your eyes.
  • A bed/ home sensor to help detect excessive pressure on a patient for example with Lou Gehrig’s, Cerebral Palsy, Diabetic Neuropathy, etc… This will help reduce the long term effects of this such as bed sores
  • and a few more to come
 
What kind of content will be posted here?

We will post obstacels we encounter, videos of our current progress, pictures of our projects along with other details as we move along through the life without limits projects.

 I hope you enjoy the content of this blog, as there is much more to come!

And thus ends the first blog post

AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES & UNITED CEREBRAL PALSY ANNOUNCE RADIO AD CAMPAIGN TO PROTECT MEDICAID

FOR IMMEDIATE RELEASE

 

UCP Contacts:
Lauren Cozzi, 202-973-7114, LCozzi@ucp.org
Alicia Kubert Smith, 202-973 7168, akubertsmith@ucp.org

AAPD Contact:
Rebecca Panoff, 202-521-4307, rpanoff@aapd.com

 

AMERICAN ASSOCIATION OF PEOPLE WITH DISABILITIES & UNITED CEREBRAL PALSY ANNOUNCE RADIO AD CAMPAIGN TO PROTECT MEDICAID 

Washington, D.C. – (July 19, 2011) –United Cerebral Palsy and the American Association of People with Disabilities launched new radio ads in Iowa and New Hampshire, educating listeners about the disastrous effects that Medicaid cuts would have on Americans with disabilities and their families. Without the services that Medicaid provides, many people with disabilities would be unable to work, contribute to their communities, and lead independent lives. For parents of people with disabilities, Medicaid services often make the difference between being able to work and having to go on public assistance—or make the choice to put a child in an institution. The ads are the first in a series of initiatives to reach out to conservatives and people of faith to join the fight to protect Medicaid.

“These ads are meant to remind members of Congress that Medicaid provides a lifeline to Americans on both sides of the aisle,” said Stephen Bennett, President and CEO of United Cerebral Palsy. “Radio audiences are going to hear from people of faith, reminding policy makers that gutting supports for the most vulnerable in our society has an impact beyond the balance sheet. Bipartisan leadership in Washington needs to know that an assault on Medicaid is an attack on the very Americans who will help lead the nation back to economic prosperity. People with disabilities and their families will not remain silent on this issue, now or at the ballot box in 2012.”

“We are sending a message: members of Congress who would deny American families this vital resource are going to be held accountable when they return to their districts,” said AAPD President and CEO Mark Perriello. “This is no time to be posturing for 2012, when Americans are living in 2011. Instead of yanking the rug out from under American families who want to keep going to work and contributing to their communities, our leaders need to do their own jobs and honor their own commitments to public service,” he added.  

The ad in Iowa features Sue Hetrick, an Ohio mother whose son, Micah, has Down syndrome. Without the aide that Medicaid provides for Micah, Sue would have to leave the workforce. In the ad, Hetrick says:

As a mother…a taxpayer….and a woman of faith, I pray we can fix our nation’s finances without hurting people with disabilities.We’re all God’s children and deserve a life with dignity. Let’s make sure our leaders in Washington don’t forget it.

Father Tom Dunstan, a Catholic Priest from New Hampshire, appears in the adin that state. Dunstan speaks from a faith perspective, quoting scripture:

Whatever you do to the least of my brothers, that you do unto me.

He calls upon the listeners to take action:

As God’s children we are called to serve one another. Let’s make sure our leaders in Washington don’t forget it.

To listen to the ads or read the transcripts, visit www.aapd.com and www.ucp.org.

 

About United Cerebral Palsy

United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

 

About The American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially.  AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national force for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: www.AAPD.com.

 

# # #

 

New Report Compares Effectiveness of Therapies for Autism

The federal Agency on Health Care Research and Quality (AHRQ) recently conducted a review of the research on autism therapies looking at what evidence is available regarding the effectiveness, benefits, and harms of therapies used to address the core and associated symptoms seen among children ages 2–12 years with autism spectrum disorders. The findings were published in two separate reports, one for clinicians and one for parents titled, "Therapies for Children With Autism Spectrum Disorders: A Review of the Research for Parents and Caregivers."

STATEMENT FROM UNITED CEREBRAL PALSY IN RESPONSE TO PRESIDENT OBAMA’S STATEMENT

FOR IMMEDIATE RELEASE

UCP Contacts:
Lauren Cozzi, 202-973-7114, LCozzi@ucp.org 
Alicia Kubert Smith, 202-973 7168, akubertsmith@ucp.org

AAPD Contact:
Rebecca Panoff, 202-521-4307, rpanoff@aapd.com

 

PRESIDENT OBAMA PRAISED FOR STANDING UP FOR CHILDREN WITH DISABILITIES & FAMILIES DURING DEBT CEILING PRESS CONFERENCE

 Washington, D.C. – (July 15, 2011) – United Cerebral Palsy and the American Association of People with Disabilities applaud the President’s statement that debt and deficit reductions “DON’T REQUIRE US TO STOP HELPING FAMILIES WHO HAVE A DISABLED CHILD.”

Statement from United Cerebral Palsy President & CEO, Stephen Bennett, in response to above statement by President Obama:

We applaud the President for calling for solutions that preserve vital lifelines for people with disabilities and their families, who want to continue to contribute to the nation’s health and economic recovery. Gutting Medicaid is not the answer to our economic woes, and we thank all those on both sides of the aisle working to defend the most vulnerable in our country.

Statement from American Association of People with Disabilities President & CEO, Mark Perriello, in response to above statement by President Obama:

We commend President Obama for stating that the government doesn’t need to stop helping children with disabilities in order to balance the budget. Without Medicaid, many people with disabilities and their family members would be unable to work and would be forced take public assistance. Slashing Medicaid does not make economic sense and breaks our country’s promise of equal opportunity to its citizens.

President Obama’s statement during this morning’s press conference about debt and deficit reduction talks:

 

 

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

About The American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially.  AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national force for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website: www.AAPD.com.

# # #

Operation Autism: A Resource Guide for Military Families

Operation Autism is a web based resource specifically specifically designed and created to support military families that have children with autism. It is the shared product of the vision and energy of the Organization for Autism Research (OAR) and the funding support of the American Legion Child Welfare Foundation. The website provides information on autism, how to access treatment services both on and off base, a support forum for families and more!

AMERICANS WITH DISABILITIES AND THEIR FAMILY MEMBERS MET WITH WHITE HOUSE OFFICIALS

FOR IMMEDIATE RELEASE

UCP Contacts:
Lauren Cozzi, 202-973-7114, LCozzi@ucp.org or
Alicia Kubert Smith, 202-973 7168, akubertsmith@ucp.org

AAPD Contact:
Rebecca Panoff, 202-521-4307, rpanoff@aapd.com   

AMERICANS WITH DISABILITIES AND THEIR FAMILY MEMBERS MET WITH WHITE HOUSE OFFICIALS

Medicaid should not be gutted in debt ceiling negotiations

Washington, D.C. – July 12, 2011 – Today, a group of Americans who benefit from Medicaid services for people with disabilities—joined by representatives of and United Cerebral Palsy and the American Association of People with Disabilities—met with officials in the White House. They shared their personal experiences with Medicaid, putting a human face on this critical resource for millions of Americans with disabilities and their families.

“People with disabilities join all Americans in recognizing the need to tackle our national debt.  There are alternative ways to reform Medicaid without gutting the vital supports that create real opportunities for people with disabilities,” said Stephen Bennett, President & Chief Executive Officer of United Cerebral Palsy. “You wouldn’t try to make a car more fuel-efficient by reducing the amount of gasoline in the tank. Slashing Medicaid eliminates the ability for people with disabilities to go to work, stay with their families and contribute to the economic recovery.”

Bennett continues, “Medicaid can receive a sensible tune-up that also achieves precisely what both parties want: a stronger economy and a reduced deficit while strengthening the hand of Americans with disabilities to be contributing members of society. To drastically reduce this vital support is short-sighted and wrong. We welcome the chance to be a part of the solution.”

“Today’s meeting shows what is really at stake in negotiations about Medicaid—access to opportunity for millions of people across our country. President Obama has the potential to be a hero for millions of Americans with disabilities in this country. The president has often spoken about the need to look at the way policies affect real people.  Today, Anna Liebenow and the Hetrick and Guzman families showed White House officials the real-world implications of proposed cuts to Medicaid. They are among the many Americans for whom Medicaid is a lifeline to opportunity, work, and a better life.  Slashing Medicaid would amount to rolling back the clock on opportunity for people with disabilities and their families.  America is better than that,” said AAPD’s President & CEO Mark Perriello. “I believe President Obama is emboldened to continue to support Medicaid and stand up for everyday Americans in these negotiations.

Participants included:

  • Anna Liebenow of Providence,Rhode Island. Anna uses a wheelchair due to MS.  Through Medicaid, Anna receives personal assistance that enables her to volunteer in her community and work. She also serves on the board of the Rhode Island Public Transit Authority.
     
  • Sue, Micah, and Nicholas Hetrick of Columbus, Ohio.  Micah, 22, has Down syndrome.  Medicaid provides assistance during the day while Sue is at work, supporting their family. Micah volunteers in their community and recently received his high school diploma.  Nickolas, 27, recently completed his PhD and will teach English in Columbus in the fall.
     
  • Linda and Javi Guzman of Chapel Hill, North Carolina. Javi, 17, has autism and Ehlers-Danlos Syndrome (EDS), a connective tissue disease. Through Medicaid, he has an aide during the day while Linda is at work. He also receives life skills training, transportation to community activities, and medical care.

 

The families met with the following White House officials: Jason Furman, Assistant to the President for Economic Policy and the Principal Deputy Director of the National Economic Council; Keith Fontenot, Associate Director for Health Programs, Office of Management and Budget; John Carson, Director of the Office of Public Engagement; and Kareem Dale, Associate Director, White House Office of Public Engagement & Special Assistant to the President for Disability Policy.

During the meeting, participants described the benefits of Medicaid. “Without Medicaid, people’s lives are so limited,” said Anna Liebenow. “At the White House, we told the staff what cutting Medicaid would do to us and to the many people who did not have a chance to share their stories today.”

Linda Guzman explained how real families like hers can contribute to the national discussion about Medicaid: “There are so many people who can relate to the struggle.  It’s important that people see me as a parent who loves her child more than anything,” she said. “If I didn’t have these services, I couldn’t go to work.  Then what would my family do?” she added.  Speaking about his trip to Washington to tell his story, Javi Guzman explained:  “I’m going to show the world what people with autism can do.”

Sue Hetrickspoke positively about the meetings:  “They were very open to hearing our stories,” she said. “For generations, my family has been hard workers, and so have I.  When I went to the White House and said this program is what keeps me working and gives Micah the opportunity to do the same, I showed them the real-world consequences of these decisions,” she added.

For more information on these families, visit www.ucp.org/public-policy/faces-of-medicaid and www.aapd.com/Medicaidfamilies.

About United Cerebral Palsy
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit www.ucp.org.

 About The American Association of People with Disabilities (AAPD)
The American Association of People with Disabilities (AAPD), the country’s largest cross-disability membership association, organizes the disability community to be a powerful force for change – politically, economically, and socially.  AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national force for change in implementing the goals of the Americans with Disabilities Act (ADA). To learn more, visit the AAPD website:
www.AAPD.com.

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New Clinical Report on Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home

The new clinical report—Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home—appears in the July issue of Pediatrics. The report is jointly authored by the American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (ACP) and the provides practical, detailed guidance on how to plan and execute better health care transitions for all patients. The report follows an algorithmic format from age 12 through the transfer of care to an adult medical home.