Many families focus on Mother’s Day and Father’s Day during this season of the year. But for many moms and dads, it is a bittersweet recognition. They are parents of children with disabilities — children who will never be fully capable of caring for themselves, living independently, earning a living, and managing their finances.

For them, the task of parenting has a never-ending timeline. And what they worry about most is what will happen when they, in all likelihood, pass on ahead of their children.

How do you create a lifetime plan for someone who will always need care? It’s not only a question of money, but a question of responsibility. Fortunately, there is a financial planner who has dedicated her life to creating a planning system for families of children with disabilities.

Mary Anne Ehlert’s interest in planning for these children started with her own sister, whose disabilities as result of cerebral palsy impacted the entire family. The story is detailed in Ehlert’s book: The Gift I Was Given.

The need to confront the issues of financing and planning for her sister led Ehlert to create a simple workbook designed to chronicle life histories and catalog important information. It has since grown into broad-based planning and advocacy program for the disabled.

You can find it all at www.ProtectedTomorrows.com. The website describes it best: “Protected Tomorrows Inc. is an advocacy firm that enhances the lives of people with special needs through a comprehensive life planning process. We create Future Care Plans, which address the needs of the individual with developmental disabilities, mental illness, physical disabilities, or cognitive and neurological diseases in the following areas: education, residential, legal, financial, health care, government benefits, and employment.”

Read entire article here: http://www.suntimes.com/business/savage/12509511-452/financial-planning-for-those-who-cant.html

By Maureen Brosnahan, CBC News 

Tyler Austin is one of thousands of Canadians who can now speak, thanks to MyVoice, a new technology developed by two University of Toronto students.

Tyler, 18, is from Toronto and has cerebral palsy, which affects his muscle control and makes it difficult for him to speak. Until now, he had to depend on pointing to a few words on a board on his wheelchair to express himself. It was frustrating for everyone.

“He would throw things on the ground, he would get upset because he could not communicate what he wanted to say,” his father, Eric Austin says.

But now a state-of-the-art application on his new iPad has opened up a whole new world, allowing him to independently express his own thoughts and feelings verbally and do things for himself.

Tyler taps the tablet, which highlights the words and sentences. Then’s he’s talking through MyVoice.

“I will go to camp this summer,” the synthetic voice says. “I will be able to use my iPad to communicate with my mom and I will mount my iPad on my chair so I will be able to use it comfortably.”

MyVoice is the brainchild of University of Toronto students, Alex Levy, 25, and Aakash Sahney, 22. They came up with the idea two years ago as part of their work in the University of Toronto’s Technologies for Aging Gracefully lab.

Now it’s being used by more than 12,000 people around the world on iPads, iPhones and android devices. Users include young people with disabilities such as cerebral palsy, autism and muscular dystrophy as well as elderly people affected by strokes, ALS, Parkinson’s disease, aphasia or other conditions.

Until now, technology to help those with disabilities communicate usually meant heavy, clunky machines which were expensive, often costing thousands of dollars. MyVoice costs $189, a one-time fee that offers customized set up, lifetime support and upgrades and one-on-one support to help users customize it for their individual needs.

Read and listen to the interview here: http://www.cbc.ca/news/technology/story/2012/05/04/f-myvoice-speech-aid-disability.html

By EMILY ANNE EPSTEIN

Karen Elder Anderson’s determination was infinitely stronger than any of the the diagnoses her doctors handed down.

The slight, 65lb woman suffered from cerebral palsy, spina bifida and mental retardation (MR), but she was able to fight her humble beginnings in Orlando’s Sunland Hospital, a state institution for the severely disabled, to forge her own future.

When she passed away on May 4 at the age of 46, she left behind her loving husband of eight years, Kenny Anderson, and a heavy dose of inspiration.

‘Unlike so many people, she knew exactly what she wanted out of life. She had three specific goals: live independently, have a job and get married,’ said Debbie Salamone, to the Orlando Sentinel.

Mrs Anderson met her husband Kenny in a group home, as Mr Anderson also suffered from cerebral palsy and MR.

The two built a life together and defied the expectations of their social workers and even their own families, Ms Salamone said.

The trick, she said, was that Mrs Anderson refused to believe she couldn’t lead a normal life.

‘She never saw herself as different from anyone else,’ Ms Salamone said.

Living in an institution for most of her life, Mrs Anderson rebelled against the confinement and supervision people with mental and physical disabilities are often subjected.

Read more: http://www.dailymail.co.uk/news/article-2141016/Trailblazer-disabilities-dies-Despite-cerebral-palsy-spina-bifida-mental-retardation-held-job-married-man-loved-inspired-many.html#ixzz1uHqxZuuy

I never knew Ashton Kutcher had a twin brother, Michael, or that he had cerebral palsy. But now I do and I am wowed. Recently, Michael traveled to Washington, D.C., to push for more research funding for preventing CP. Michael has a mild form that affects his right side, hearing and vision. He’s befriended an awesome little girl, Bella, who has more involved CP; she was there with him.

One in every 268 kids has cerebral palsy and nearly 800,000 Americans have it, according to Reaching For The Stars (RFTS), a nonprofit that advocates for more CP research. It is the most common motor disability in children. And yet, there is no dedicated funding at the National Institutes of Health or the U.S. Centers for Disease Control for cerebral palsy research.

Read the entire article here: LoveThatMax.com

Maricyl Palisoc and her partner, Charles Wilton, are the parents of a healthy month-old baby boy named William. Both parents have cerebral palsy, a disorder that limits their motor skills and slurs their speech, but has no effect on their cognitive abilities.

However, the Peel Children’s Aid Society is concerned about the couple’s ability to take care of their son and has expressed an intention to remove William from their home unless his parents secure 24-hour care from an able-bodied person.

The boy’s mother told CBC that she and her partner do not want to lose their son.

‘From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do.’— Ryan Machete, Coalition for Persons with Disabilities, on Maricyl Palisoc’s abilities

“We know that we need help, but we know that we are the best thing for our boy right now,” Palisoc said. “We both wanted to be parents and now we are, and we don’t want do give anyone control of our family.”

So far, the couple have been receiving the type of help that the CAS has demanded, thanks to Ryan Machete, a program co-ordinator with the Coalition for Persons with Disabilities, which provided the funds for the services since William’s birth.

Machete said he’s not convinced it is necessary to spend $2,000 a week for a caregiver when Palisoc is able to change diapers, breastfeed and to “do the necessities” that come with caring for a newborn.

“From what I’ve seen when I’ve been at the apartment … there’s really nothing that she’s unable to do,” Machete told Metro Morning.

READ ENTIRE ARTICLE HERE.

Over the past four years, Chris has been working closely with people that use AAC. He has recently been elected president of USSAAC (United States Society of Augmentative Alternative Communication). He has also formed an organization called BeCOME AAC. It stands for Building Connections with Others through Mentoring and Education about AAC. Chris is a graduate of Hope College and has studied at Western Theological Seminary.

He currently lives in Grand Rapids with his wife Dawn.

For Stopa, the beer is a perk, provided free for working at the brewery. But unlike other workers who enjoy the same benefit, Stopa’s job is a little different. He helps with inventory with the aid of assistive equipment and the help of a brewery employee and a caseworker for Imagine!, a local organization that provides services for the disabled.

Stopa has cerebral palsy and uses his head to guide his wheelchair. A device called a DynaVox allows him to communicate with phrases that go beyond the slight nod of the head, facial expressions and “yeah” that were his outreach to the world in the past. The laptop-size, tablet-like computer also is programmed with the Twisted Pine inventory, organized in a manner that allows Stopa to use a button strapped to his wrist to make selections on the screen of the DynaVox, which is strapped to his chair.

Stopa got the job mostly on the strength of his personality, says Chris Baumgart, an assistive technology specialist, who works at Imagine’s Smart Home, where Stopa lives. Over the years, Baumgart and other Imagine! staffers had taken Stopa out for the occasional beer at Twisted Pine, where employees got to know him.

“Truth be told, Twisted Pine would have hired him to hang out and be Gerald. They love him,” Baumgart says.

But brainstorming among folks at

Richard Lowe of Imagine! helps Gerald Stopa get through the bottling area at Twisted Pine Brewery in Boulder. (CLIFF GRASSMICK

Imagine! and Twisted Pine yielded a better idea: Stopa assisting with inventory. To execute the idea, wheelchair ramps would have to be installed to get Stopa through the brewery and into the cooler. In addition, Baumgart would have to program the DynaVox with the brewery’s inventory, setting up the program as a series of menus and choices that Stopa would be able to access and use.

“One of our primary philosophies is overcoming barriers to help people lead the life they want to lead,” Baumgart says.

In Stopa’s case, that meant working outside the Smart Home, as does his wife, Donna, who is also a resident.

Reaching that goal required getting over one other hurdle: teaching Stopa, age 50, how to count for the first time. At the same time, Stopa began to learn how to read. He now knows his letters and sounds and is in the process of learning how they form words.

Richard Lowe, a supported employment specialist with Imagine!, tutored Stopa on his numbers.

“It was a long process of experimenting,” he says. “At first, we tried methods that would be just like (what you would use if) you were teaching anyone how to count.”

Lowe discovered, however, that Stopa began to get bogged down as the numbers got larger. He found that Stopa could master numbers if they were divided up into sub-units of 10, and Baumgart programmed the DynaVox accordingly.

On a recent morning, Lowe and Stopa arrived at Twisted Pine for work. Justin Tilotta of Twisted Pine, who works with Stopa on the inventory, greeted him and started working on clearing a path for Stopa’s chair through the hops-smelling brewery.

Stopa, with an ear-to-ear grin on his face, was clearly excited to get to work. With the path cleared and a sweater draped over Stopa to help him cope with the chill inside the cooler, the process began.

Stopa chose the first beer he’d like to inventory: Ghost Face Killah, which made him smile.