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Friday Wrap-Up, May 26, 2017 | a message from the Secretary of Aging

Each week the Office of the Secretary of Pennsylvania’s Department of Aging releases a Friday newsletter with information relevant to activities, issues and events for older Pennsylvanians and persons with disabilities across the Commonwealth.

Click here to download the newsletter as a .pdf file.

“Extreme Heat Message and Precautions | Be Informed, Make a Plan, Build a Kit, Get Involved” – Administration for Community Living

go kit

Summer is almost here. While we prepare to enjoy the warm weather, it’s important to take precautions in case extreme heat strikes.

By evaluating your needs, you can plan for any heat related situation.

The following steps will prepare you to handle periods of extreme heat and the associated risks:

  • Consider how potential power outages during periods of extreme heat might affect you. Plan to be temporarily self-sufficient if the electricity goes out. It’s possible that you will not have access to a medical facility or a pharmacy.
  • Identify the resources you use on a daily basis and what you can do if they are limited or not available. Make provisions for medications that require refrigeration, and plan arrangements to get to a cooling center, if needed.
  • Think about what you need to maintain your health, safety, and independence. Build A Kit that includes any specialized items such as extra wheelchair batteries, oxygen, catheters, and medication. Also include non-perishable food and water, items for service animals and pets, a cooler, and anything else you might need.
  • Check on family, friends, and neighbors who do not have air conditioning, especially those who spend much of their time alone, or are more likely to be affected by extreme heat.
  • Be watchful for signs of heat stroke and dehydration. These include shallow breathing, a lack of perspiration, dizziness, dry mouth, and headaches.

The HHS emPOWER Map 2.0 features the monthly total of Medicare beneficiaries with electricity-dependent equipment claims at the U.S. state, territory, county, and zip code level to identify the areas and populations that may be impacted and at risk for prolonged power outages.

For more information about extreme heat preparedness and tools, go to and

SOURCE: Administration for Community Living

“Planning to Age in Place? Find a Contractor Now” – The New York Times

by Paula Spahnaging in placePHOTO – Joyce Hesselberth | The New York Times

“‘All the carpets are coming up, so they won’t be a trip hazard,’ said Ernie MacNeill, walking through the split-level house in Fair Lawn, N.J., that he is remodeling for a client who struggles to walk.

“Mr. MacNeill also plans to widen a bathroom door to provide better access for a wheelchair or walker.

“‘We’ll knock this closet back,’ he added. The home’s owner, Elliot Goldberg, 71, currently has to transfer from one stair lift to another to reach his third-level bedroom and bath. Moving the second-floor closet will make space for a new lift that can turn the corner and proceed upstairs, a far safer configuration.

“Mr. Goldberg, a Vietnam veteran with multiple health problems, has lived on this quiet suburban street for 30 years. His wife died four years ago, but he shares the house with their daughter and grandson.”

Continue reading this New York Times article, click here.


“What is a caregiver? What does a caregiver do? Here are some things to think about as you begin your own caregiving process.” –

caregiver pix

What Is A Caregiver?

“A caregiver is a person who provides needed help to an aging or infirmed loved one. Caregivers may supply emotional support, physical assistance, financial assistance, and many other types of care. Regardless of the situation, there are several guidelines to consider when you provide care for an adult friend or relative:

“The Person You Care For Is An Adult.

“He or she has the right to make decisions about his or her life. You should respect that right unless your loved one has lost the capacity to make decisions or could put others in danger through his or her behavior.

“Whenever Possible, Offer Choices.

The ability to make choices is a basic freedom, so provide choices whenever possible: from where to live to which cereals to eat at breakfast to what to wear. Choices enable us to express ourselves. As your loved one’s options become more limited, through health losses, financial constraints, or social losses, you have to work harder to provide choices.

“Do Only Those Things That Your Loved One Cannot Do.

“Caregivers often take over when they shouldn’t. If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, then encourage him or her to do so. Helping your loved one maintain a feeling of independence will make him or her feel better about being in a care-receiving situation.

Click here to read the remaining list of what caregivers do at

“Say What You Mean” – Changing Aging

Collect a vocabulary from your own imagination, experience, as well as picking up skillful language use from others.”

say what you mean


“Stigma is a word that comes to us directly from its Greek origin, originally meaning ‘a mark made by a pointed instrument.’ In a more modern definition that ‘mark’ is a label or diagnosis that defines the person and is inherently negative or shameful. In botany, stigma denotes the part of a flower that accepts the pollen. I want to take this image and offer that we can use stigma more true to this definition, as the part of the organism that can accept the pollen or inspiration.”

Click here to continue reading this article at Changing Aging.

“Three New Briefs Available in Series on Revised Nursing Facility Regulations”

consumer voice logo

Consumer Voice, along with the Center for Medicare Advocacy and Justice in Aging, has released three new briefs in their issue brief series,

  • Return to Facility After Hospitalization – This brief explains bed hold rights when a resident returns to a facility after a hospitalization. The brief provides information on advance notification of bed hold rights and residents’ rights if they return to a facility after a bed hold period has been exceeded.
  • Grievances and Resident/Family Councils – This brief covers the resident’s right to file grievances and the facility’s requirement to work to resolve those concerns promptly.  Each facility must have a grievance policy and provide residents with information on how to file a grievance. Also, residents have a right to form a resident council, and family members and resident representatives have the right to form a family council.  The facility must act upon council concerns and recommendations.
  • Quality of Care – The substantive requirements for quality of care are retained in the revised regulations, and CMS has affirmed the regulations’ goals of supporting person-centered care and enabling each resident to attain his or her highest level of well-being. This brief covers those regulations as well as providing information on how the quality of care provisions have been reorganized in the revised regulations.

Read the other issue briefs in the series here.


Friday Wrap-Up, May 5, 2017 | a message from the Secretary of Aging

Each week the Office of the Secretary of Pennsylvania’s Department of Aging releases a Friday newsletter with information relevant to activities, issues and events for older Pennsylvanians and persons with disabilities across the Commonwealth.

Click here to download the newsletter as a .pdf file.

“New Educational Film Pay It Forward: Volunteering for a Clinical Trial Encourages Clinical Trial Enrollment” –

Film Release Coincides with 2017 Clinical Trials Awareness Week

Washington, D.C., May 3, 2017 – In honor of Clinical Trials Awareness Week, the Alliance for Aging Research (Alliance) has released a new animated “pocket film,” Pay it Forward: Volunteering for a Clinical Trial, to encourage clinical trial volunteerism. The five-minute film explains what clinical trials are, the science and methodology behind them, the benefits of participation, and how to learn about trial availability.

A vital part of medical research, clinical trials are research studies involving people that evaluate the effects of an experimental test or treatment. Clinical trials cannot happen without the participation of volunteers. However, clinical trials overall are significantly under-enrolled—with 37 percent of trial sites failing to meet their enrollment goals, and 11 percent never even enrolling a single patient.

Under-enrollment is an especially significant problem among older adults, who are also those most disproportionately impacted by chronic disease. For example, even though more than half of all cancers are diagnosed in people ages 65 and older, only 25 percent of cancer-focused clinical trial enrollees are from that age group. Keep reading this news release.

clinical trials

It’s an exciting time in biomedical research.

The news is filled with stories of breakthrough discoveries that have the potential to change and save lives. But getting these discoveries from the research lab to the bedside is a long and complex process, and it depends on clinical trials.


These trials can’t happen without the participation of volunteers.  At any given time, there can be thousands of clinical trials going on across the country, but overall, clinical trials are significantly under-enrolled — 37% of trial sites don’t enroll enough patients to move forward, and 11% fail to enroll even one patient.  This means that these innovative discoveries may never make it to the patients that need them.

Under-enrollment is an especially significant problem among older adults, who are also those most disproportionately impacted by chronic disease.  This is due to many factors, including a high likelihood of comorbidity exclusion, perceived financial issues, transportation barriers, and a fear of science and the system.  A lack of awareness about what clinical trials are and how they work, also plays a role.

Watch this video: Pay It Forward: Volunteering for a Clinical Trial

To promote awareness of the need and importance of patient enrollment in clinical trials, the Alliance for Aging Research partnered with The Pharmaceutical Research and Manufacturers of America (PhRMA) to release a short, animated “pocket film” that discusses what clinical trials are, how they work, the need for a diverse group of clinical trials volunteers, and how they can provide better treatments, breakthrough cures, and new hope to patients and generations to come.

Learn more at

Special Alert: Amendments to Affordable Health Care Act (ACHA) Remain Harmful – Pennsylvania Health Law Project

Wednesday, May 3, 2017— Today, Representatives Fred Upton of Michigan and Billy Long of Missouri struck a deal to win back moderate Republicans that committed to voting against the House Republican bill to repeal and replace the Affordable Care Act.  But fresh analyses from national consumer advocacy groups, like the Center on Budget and Policy Priorities, reveal the House bill still eviscerates critical protections for people with pre-existing conditions and fundamentally changes the Medicaid program.  A vote could come as soon as tomorrow (Thursday) afternoon.  This remains an incredibly crucial time for advocacy.

As PHLP reported in our April Health Law PA News, the House of Representatives revived its proposed legislation to repeal and replace the Affordable Care Act. After not having enough support to bring the legislation to the floor for a vote in March, House leadership and the Trump Administration have been engaged in negotiations with Republican members of the Freedom Caucus and the more moderate Republican members of the Tuesday Group.  The deal struck (known as the MacArthur Amendment) allows states to opt out of several Affordable Care Act mandates: the requirements related to covering Essential Health Benefits, and the protections for consumers with pre-existing conditions that prevents them from having to pay more for coverage based on their health conditions.

The House’s bill appears to move people with pre-existing conditions to high risk health insurance pools.  Congressional leaders are reportedly considering adding $8 billion to the $130 billion the bill already included for grants to states for these pools. But some experts have concluded $138 billion for high-risk pools is not enough.  It would leave these pools underfunded by at least $200 billion (other experts have arrived at much higher estimates).

Moreover, high-risk pools have more fundamental flaws. Where the ACA made it possible for people with pre-existing conditions to get the same kinds of insurance as everyone else, the amended House bill would segregate them in high-risk pools that pool sick people with even sicker people. Historically, that led to coverage with very high premiums, benefit exclusions, annual and lifetime limits, and other problems – even when pools were sufficiently funded to avoid waiting lists.  Pennsylvania’s previous experience with the adultBasic and PA Fair Care bears this out. Those high risk pools, which partially subsidized insurance premiums for people often in need of costly medical care, turned out to be more expensive than Pennsylvania officials, consumers, and private insurers expected.

Equally important, the drastic changes to Medicaid included in the original AHCA legislation remain:

  • Effectively ending Medicaid expansion. Under the House bill, the federal government would no longer provide enhanced funding for new Medicaid enrollees after 2019 (including for 700,000 low-income Pennsylvanians), forcing most or all of the 31 states and Washington D.C. that have adopted the ACA’s Medicaid expansion to drop it.
  • Threatening Medicaid home- and community-based services for people with disabilities.  The House bill drastically changes the way the federal government finances the Medicaid program by capping and cutting federal funding for virtually the entire Medicaid program, setting annual limits on federal funding per-enrollee that would grow more slowly than the need for that funding would rise, and forcing states to make deeper cuts in their Medicaid programs with each passing year. The Robert Wood Johnson Foundation estimated that this aspect of the AHCA would slash $880 billion dollars from Medicaid across all states (and cut Pennsylvania’s Medicaid program by $162 billion).  Faced with these large cuts in federal Medicaid funding, Pennsylvania would have to cut home- and community-based services, an optional Medicaid benefit that most states already limit based on available funds. These services, which include nursing and home health care and help with chores, meals, transportation, and other services, let people with serious health problems remain in their homes instead of having to be placed in a nursing home.

The vote counts are close—so close that Pennsylvania’s representatives can literally make the difference! The hopeful news is that several Pennsylvania Republican Congressmen continue to express grave reservations about the House bill.  It will be up to them to stop a bill that jeopardizes the health care of millions of Pennsylvanians.  This is the time to express your concerns about the ACHA and about Medicaid and its future funding.

Announcing the Re-launch of

Tomorrow, May 4, ACL plans to launch our redesigned website.

This launch is really a first step in overhauling our site, and it accomplishes two primary things.  The first is behind-the-scenes. This site is built using software that will make it much easier for us to share information quickly. That software also includes dramatic improvements in search capabilities, which we hope will make it much easier for people to find what they’re looking for.

We also reorganized the content on our site to make it easier for people who are not familiar with ACL to find the information they need, and also to better illustrate the work we do.  We know we probably haven’t gotten the program category names quite right, and we’re looking for feedback there.  We also know we need to do a lot of content updating and reworking.

We added a page to the site that helps explain how the site is structured. Once the site is launched, you will be able to access that page at

One thing that was absolutely critical as we built the site was accessibility and usability, and we believe the site can be used by everyone. We have tested it extensively with software, but more important, actual users have navigated through the site without difficulty. If you have a different experience, please let us know. We’ll get you the information you’re looking for and work to fix the issue.

Unfortunately, if you have bookmarked pages within our existing site, those links will no longer work.  If you cannot find what you’re looking for through the navigation menus or the search feature, please write to us at and we’ll try to get you what you need.

We’re excited about this launch, but we know it is far from perfect.  It would be great to know what you like and what you don’t like, and anything we don’t have that you’d like to be able to find here. This will be a work in progress for some time, and your input will help us make it better.