Daily Living

Everyday Life with ALS: A Practical Guide

Introduction

Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) will unquestionably alter your life in almost every aspect.

You should remember, however, that no one knows exactly how you personally will be affected by the disease or how rapidly it will progress. Statistics can shed some general light on what you can expect from ALS, but they can’t predict the course of ALS from person to person.

Last Updated: 
Sat, 03/13/2010 - 13:34

Leaving Nursing Homes Behind: New Funds, Strategies

The federal government is moving ahead with plans to expand access to home and community based services for individuals who receive Medicare and Medicaid benefits.

HHS Secretary Kathleen Sebelius announced in April that $3.7 billion in federal funds will be made available to implement the Community First Choice Option, a provision of the new health care law (the Affordable Care Act) which provides incentives for states to offer services enabling people to stay in their homes and communities, rather than in institutions.

FCC Surveying People with Disabilities about Calling 911

The Federal Communications Commission (FCC) is conducting an online national survey of individuals with disabilities to determine the most effective and efficient methods to access emergency services.

According to the FCC, a new emergency-access system is being developed that will allow people to reach 911 not only by using voice telephones, but text, video and other devices, some of which use the Internet.

Faith Keeps Him Singing

The last song Joe Paul Nichols recorded before ALS took his voice was a country gospel standard called “Faith:”

You must have faith
In everything you do
Faith will help you find a way
Faith will see you through

Faith can move mountains
And change the tide at sea
You can follow this guiding light
Wherever you may be

Medicaid Changes Expand Access to Home Care

Nearly 3 million disabled and elderly Americans rely on Medicaid to provide home health aides, personal care attendants, group homes, adult day care, meals, transportation and other services that enable them to stay in their homes and communities and out of nursing homes.

Deshae Lott Scholarships Awarded

Three accomplished scholars determinedly pursuing their educations while living with neuromuscular disease are the first winners of the CMMS Deshae Lott Ministries outreach program scholarships.

“We were so impressed,” with the winning candidates, said Deshae Lott, 39, a teacher and minster from Bossier City, La., who founded the nonprofit that bears her name. “These three show great strength of mind and character. Each of them strives to maximize within their limitations.”

Vital Workforce Honored During Direct Support Professionals Week

Do you know an outstanding professional caregiver?  This would be a good week to show some special appreciation for the important work he or she does.

Spurred on by organizations that represent professional caregivers, the United States Senate has declared the week starting Sept. 12, 2010, to be the third annual National Direct Support Professionals Recognition Week. Events are planned across the country to celebrate and raise awareness of the work of direct support professionals, a group that includes personal care attendants and home health aides.

A 'Living Breathing Document': Thoughts on the ADA

The Americans with Disabilities Act— the ADA — turned 20 on July 26, 2010. How has this landmark civil rights legislation affected your daily life? Have you experienced discrimination in employment, in access or in attitude? What are some of the best changes that have occurred thanks to the ADA — and where do we still need to improve?

The ADA Turns 20

Two decades ago, on July 26, 1990, President George H.W. Bush signed into law the landmark civil rights legislation called the Americans with Disabilities Act, intended to eliminate barriers for people with disabilities.

Two decades later, daily life has become much more accessible and fairer in many ways, not only for people with disabilities but for everybody. And yet — in physical accessibility, in employment discrimination, in general public understanding — there still is a ways to go.

Biker with LGMD Creates His Own Accessible Motorcycle

The “passenger” in Steve Williams’ motorcycle sidecar doesn’t say much, but if it could talk, it probably would have plenty of stories to tell.

 Steve Williams explains how he and his brother outfitted this Honda Nighthawk with a special wheelchair-carrying sidecar.

The passenger is Williams’ manual wheelchair.

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