April15,2015

A Roadmap to “Life After High School”

A graduation photo of Corie McNamara in her cap and gown.

By Guest Blogger Tracey Fecher, Vice President of Programs for Community Gatepath

Throughout the next decade, more than half a million young people with Autism Spectrum Disorder (ASD) in America will be “aging-out” of the education system when they turn 21 or 22. Those statistics are alarming. Families will face overwhelming changes when the systems that have been in place to support both child and family disappear once school services end. The premiere of NBC Dateline’s investigative report, “On the Brink,” earlier this week created a great buzz in the autism community across the nation, effectively shining a spotlight on this crisis. Camera crews documented the emotional journey of two families, during the course of a few years, who navigated this important transition in their child’s life.

ASD is the fastest growing developmental disability nationally. According to the Centers for Disease Control and Prevention (CDC), the number of people diagnosed with ASD is increasing rapidly and expected in some states to double during the next decade. Federal and state governments must respond to the growing demand for adequate support systems and services for adults so individuals with intellectual and developmental disabilities can thrive and aren’t left floundering when they no longer have the education system that has supported them since they were preschoolers.

Young people with autism and their families need tools to help them prepare for the transition into adulthood. The mother of one of the young men highlighted in “On the Brink” described this life-phase as equivalent to sadly being “pushed off a cliff.”

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April08,2015

Start the Conversation: Why We Need Affordable Personal Care Options

A photo of Eli Gelardin

By Guest Blogger Eli Gelardin, Executive Director, Marin Center for Independent Living

My earliest memories of disability did not come from my own experience with dwarfism and hearing loss, but through my grandfather, Irv, who experienced a massive stroke shortly after I was born. The stroke resulted in full paralysis on the left side of his body and my grandfather required full-time personal care thereafter. Like many Americans, he became disabled later in life.

My grandfather’s story is not unique; in fact, one of the significant challenges our country is facing today is that we are aging and consequently aging into disability. According to the U.S. Census Bureau American Community Survey, 70 percent of adults older than the age of 65 will need homecare supports in their lifetime. Since approximately 14 percent of our country’s population is older than 65, this means roughly 4.4 million Americans will need homecare in order to continue living independently in their communities.

My colleague, Alice Wong, wrote an excellent article published on Disability.gov’s blog, entitled “Consumer Directed Personal Care as a Human Right.” In her post, she describes the cost-effectiveness of personal care versus nursing home care and/or other medical institutions. As she notes, California spends three times more on nursing facility care ($32,406 per user) than home and community based services ($9,129 per user). She also discusses the value of consumer directed personal care programs like In-Home Support Services (IHSS) in California and describes the tremendous impact they have on keeping individuals with disabilities living and working in the community.

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April06,2015

Inspired to Connect

Seven individuals representing those with invisible disabilities.

By Guest Blogger Wayne Connell, Founder and President, Invisible Disabilities Association (IDA)

Yes, I’m one of the 72 percent of online adults who visit Facebook at least once a month. Actually, I check my Facebook multiple times a day. There were more than 1.4 billion active Facebook users worldwide as of January 28 and more than 890 million use it daily. And of course I use Twitter too, along with the 288 million other users sending 500 million tweets a day, according to Twitter’s statistics page.

I founded the Invisible Disabilities® Association in 1996 and we launched our first website in 1997. The Internet, or World Wide Web, was just getting started. Yet we had twenty- to twenty-five thousand people a month visit our site. Why so many? I believe that people living with illness and pain were trapped in their homes and the Internet became a window to the world for them.

In 1999, we launched our first online community on Yahoo groups and the Invisible Disabilities® Community (IDC) was born. IDC became a place to share the triumphs and tragedies of life with people who were on similar journeys. In 2007, we moved the community to the Ning platform, which was like a private MySpace. The community grew to more than 4,500 during the next seven years.

“I joined [the IDA Social Network] soon after I had to quit work and it saved my life. To this day (over 5 years later) I still maintain friendships that span the country (no, the world). It is a website that values your feelings and your privacy.” – Jane

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April03,2015

Getting Hired for Work-at-Home Is a Different Process

A photo of Paula Reuben Vieillet, President and Founder of Employment Options, Inc.

By Guest Blogger Paula Reuben Vieillet, President and Founder of Employment Options Inc. 

Even though there are many similarities between applying for a local job and applying for a virtual work-at-home job, there are many significant differences. Your knowledge about this process can be the edge you need to secure the job you want!

The Application Process

Unlike jobs in your local community, almost all work-at-home jobs require an application to be submitted online. This submission tells the employer that you have access to a computer and you have a specific skill set to use the Internet and follow detailed instructions online. Most will not take phone calls or emailed resumes. They require you to use the submitted form.

Unlike applying in-person, tech issues can get in the way. Nevertheless, they can be overcome with patience and persistence! Below are some tips to solve some of the most common problems.

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April01,2015

Exploring Supported Decision-Making as an Alternative to Guardianship

A photo of Administration on Intellectual and Developmental Disabilities Commissioner Aaron Bishop.

By Guest Blogger Aaron Bishop, Commissioner, Administration for Intellectual and Developmental Disabilities

In January, the Administration for Community Living (ACL) published a blog that led to a rich discussion among our readers. The purpose of the blog was to announce the recent funding of a national resource center to explore and develop a concept known as supported decision-making. The responses included everything from enthusiastic support, to cautious optimism about the concept, to outrage. The range and diversity of stories, experiences and responses reflect the fact that there is no one-size-fits-all solution to this important issue. In fact, many of the concerns shared by readers highlight exactly the sort of questions the National Resource Center for Supported Decision- Making seeks to explore during the coming years.

Supported decision-making is not a program. Rather, it is a model that can replace or, in some cases, be used alongside existing guardianship arrangements. The guardianship model assumes that it is necessary for others to make all decisions about how people with intellectual and developmental disabilities and older adults with cognitive impairment live their lives. Supported decision-making, on the other hand, starts with the assumption that, with adequate support, people can and should retain choice and control over their lives.

The key is a process centered on the person to whom the decisions apply. Supported decision-making provides assistance in specific ways and in specific situations, based on the individual needs of the person.

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