Helpful information from repuatable sources about caring for yourself or a loved one who has a debilitating condition.

June 22, 2018

Lance Robertson, ACL Administrator and Assistant Secretary for Aging

The right to live independently, integrated into the community, is a cornerstone of the disability rights movement. It’s also the core of the mission for the Administration for Community Living — it’s even built into our name. ACL was created around the fundamental principle that all people, regardless of age or disability, should be able to live independently and fully participate in their communities.

For decades, people with disabilities have worked to turn this principle into a reality. Looking at this history, certain moments stand out as turning points. For example, the passage and implementation of landmark legislation including the Americans with Disabilities Act, Rehabilitation Act, Individuals with Disabilities Education Act, and Developmental Disabilities Assistance and Bill of Rights Act have each helped make community living possible for more Americans.

Today, we celebrate the anniversary of another important milestone. Nineteen years ago, the Supreme Court ruled in Olmstead v L.C. that people with disabilities cannot be unnecessarily segregated into institutions (like nursing homes and other facilities) and must receive services in the most integrated setting possible.

The Olmstead decision opened the door to innovations and programs that make services and supports more available, allowing people to live the lives they choose, in the communities they choose, with family and friends. It also has given the aging and disability networks a new tool to advance community living. I am proud of the work ACL, the predecessor organizations it brought together in 2012, and the many organizations we fund have done to fulfill Olmstead’s promise and make a difference in peoples’ lives.

For example, across the country Protection and Advocacy Systems are working to translate Olmstead’s charge into more integrated schools and workplaces, as well as more services and supports in the community. Centers for Independent Living offer the peer support, tools, and resources many need to live in the community, including helping those living in institutions transition to the community.

This year we are also proud to celebrate the 40th anniversary of the creation of ACL’s National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Title VII Independent Living Programs, both established by the Rehabilitation Act. Each has been a catalyst for progress and continue to spur innovation, training, technology, and other services that promote independence, community participation, and employment.

People of all ages have benefited from Olmstead. ACL’s programs for older adults are doing their part to make community living possible by providing critical services, including meals and caregiver support.

ACL, our networks, and partners are demonstrating that expanding community living options is both the right thing to do and it’s often the fiscally responsible thing to do. Skilled nursing and residential living can cost upwards of $225,000 a year. Services and supports provided in the community are usually far less expensive. The potential for cost savings can be seen in a demonstration program known as Money Follows the Person (MFP). The program eliminates barriers to home- and community-based services and allows people to transition out of institutional settings and receive long-term services and supports at home. A report released by HHS in December looking at eight years of MFP data estimated that, in the first year after transitioning into the community, MFP participants saved Medicaid and Medicare $978 million in medical and long-term support and services costs.

We’ve come a long way since the Olmstead decision, but we’re far from done. As important as our successes are—especially to the people who now live independently in communities—we still have a lot of work to do to make the vision of Olmstead and the Americans with Disabilities Act a reality.

ACL is committed to seeing community living become a reality for every older adult and person with a disability who seeks it.

I’m honored to work with you towards this important goal.

After all, while the Olmstead decision may have particular significance for older adults and people with disabilities, ultimately, it benefits all of us. Our communities and our lives are richer with a diversity of people, abilities, and perspectives. Older adults offer a critical link to our history and culture in our neighborhoods, congregations, and gatherings. People with different life experiences advance new ideas and spark innovation in business and the community.

We all miss out when community living is out of reach.

Reprinted with permission from 

Woman in Hat

Suyin’s bus was late. Even though it was noon on a very hot summer day, she decided to walk from the grocery store to her home. At 72—healthy and active—Suyin thought the heat would be no match for her! Yet, after walking just one block, she felt dizzy and weak.

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Go4Life logo

Exercise and physical activity fall into four basic categories—endurance, strength, balance, and flexibility. Most people tend to focus on one activity or type of exercise and think they're doing enough. Each type is different, though. Doing them all will give you more benefits. Mixing it up also helps to reduce boredom and cut your risk of injury.

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June 4, 2018

By: Christopher Jones, Director, National Mental Health and Substance Use Policy Laboratory, Substance Abuse and Mental Health Services Administration

Christopher Jones, a captain in the Commissioned Corps, tells of his struggle with addiction and his story of recovery to give hope to others.

Note: This is one of a series of stories by people whose lives have been affected by the use of opioids. Fighting the nation’s opioid crisis is one of HHS’s main priorities.

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March 29, 2018

People with dementia due to Alzheimer’s disease are known to have disrupted sleep. New NIH-funded research, published online Jan. 29, 2018, in JAMA Neurology, links a disrupted sleep-wake cycle to an earlier, preclinical disease phase, in which people have evidence of the disease but no symptoms. The study, by researchers at the Knight Alzheimer's Disease Research Center at Washington University in St. Louis, Missouri, suggests that a fragmented sleep-wake cycle might be explored as a biomarker for preclinical Alzheimer’s.

For the study, 189 people (average age, 66 years) wore watch-like sensors for 7 to 14 days to collect data about their rest and activity levels. These participants also kept a sleep diary. In addition, they had positron emission tomography (PET) brain scans, cerebrospinal fluid analysis, or both to look for any biological signs of Alzheimer’s, including abnormal levels of the proteins amyloid and tau.

The researchers found that cognitively normal participants who had biological changes related to Alzheimer’s were more likely than those without these changes to have fragmented sleep-wake cycles, with higher-than-normal periods of rest during the day and more periods of activity at night.

Of the participants, 139 showed no evidence of Alzheimer’s, but 50 had abnormal amyloid plaques seen on PET scans or other signs of the disease. These 50 participants had more disruption in their circadian rest-activity (sleep-wake) cycles than those without evidence of Alzheimer’s. There were no significant differences between people with and without the ApoE4 genetic risk factor.

Increasing age also was associated with circadian dysfunction, particularly in men, the researchers found. However, after adjusting for age and gender, they concluded that aging and preclinical Alzheimer’s disease pathology have separate negative effects on circadian rhythm.

The question of whether circadian dysfunction contributes to Alzheimer’s disease pathology or vice versa is still being explored. Previous studies have shown a link between poor sleep quality and beta-amyloid levels in the brain, and findings in this study also suggest circadian dysfunction could contribute to early Alzheimer’s changes in the brain. Given that Alzheimer’s disease starts years before symptoms appear, these differences in the sleep-wake cycle could merit further study as an early indicator of disease.

Reference: Musiek ES, et al. Circadian rest-activity pattern changes in aging and preclinical Alzheimer disease. JAMA Neurology. 2018 Jan 29. doi:10.1001/jamaneurol.2017.4719. [Epub ahead of print]

March 29, 2018
Lance Robertson, ACL Administrator and Assistant Secretary for Aging

We all know that good nutrition is the foundation of good health. Healthy eating can help people achieve and maintain a healthy weight, prevent the onset of chronic diseases, reduce inflammation, and speed recovery from injuries. On the other hand, poor nutrition is connected to a variety of health problems.

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