Caring Across Generations Building Campaign to Put Caregiving Issues on Public Agenda

Caring Across Generations, a coalition that began supporting home care workers, has expanded its focus and launched a national campaign to put issues related to caring for older and disabled persons on  national and state public policy agendas. Caring Across Generations was formed in 2011 by activists with the Domestic Workers Alliance and Jobs with Justice.  The coalition has 200 national organizations as members and 17 field partners along with 150,000 on its online supporters.  The organization is led by Ai-Jenn Poo who is on a national tour promoting her book The Age of Dignity which describes the issues related to the growing number of older persons and offers a platform for action.  She says in her book that there is  “a caregiver majority” in this country that needs to identify itself, build its power and promote policies that respect the dignity of older persons.   She says that a culture change is needed to shift how the country views caregiving.

The coalition held a national conference call on Tuesday night and also stressed that the campaign seeks to bridge the potential polarization in society of a growing older white population and a growing younger population of many races and ethnicities.  On the call, staffpersons said the coalition’s  goals are

– to create a better long term care system

– to develop a new approach to caregiving that respects workers and adds more caregiving jobs

– to promote policies that allow every person to have a choice of how they will age well

The New York StateWide Senior Action Council have been supportive of these goals and is exploring an alliance with the Caring Across Generations.   This blog and website were formed also in alliance with the national coalition.  Here in New York, we will be working in the coming months to bring together the labor and worker activists in the caregiver field with senior activists and those in the aging network who support informal caregiving by families and friends.  The campaign to enact paid family leave in New York State is currently becoming part of the effort to promote this key issue to support patients, families and caregivers and is providing an avenue to build the power of the caregiver majority.

The next national conference call will be at 8:00 p.m. on June 9th.  You can contact the national field director Lisa Adler at to inquire about that call.  To read more about the coalition go to

Hospitals, Doctors Inviting Patients to Open Online Accounts to Review Health Records, Manage their Care

Getting access to your own medical records has been sometimes problematic in the past.  In fact, the New York State Office of Professional Medical Conduct in the Department of Health takes complaints from patients denied access to their records.  There are specific rules regarding the governing of the records in terms of how long they need to be kept and, also what information such as physician notes, etc which don’t have to be included.  For more information, click this link

Now, with all the transformations in health care and the effort to require electronic medical records, hospitals and medical groups have begun inviting patients to establish online accounts through a patient “portal” that allows the user to establish a username and password and then set up an account.  The patient can access their list of appointments, medications prescribed and test results.  They can even enter their own notes on their health care.  Albany Medical Center has set up a patient portal at   Parents can also track the health care of their children up to a certain age.  Make sure to check the rules that different facilities have on this and how a health care proxy can access their records.  A separate application form is used for that.  Usually, the provider with send an email invitation to a patient who requests access and then they are sent a link to register.

This website is really being set up as not just a news source but a network for advocates, so please leave comments about whether your doctors or hospitals are setting up similar patient portals and identify any issues or concerns.

Here is some other news this morning….

An assisted living facility with 60 units being built by a church in Baltimore was destroyed by fire in rioting last night.

If you like the New York Times, but can’t read it every day, you might want to make a point of getting the Tuesday paper which has the special Science section.  Every week there are stories regarding health care and often on aging issues. Today there is a story from the The New Old Age column by Paula Span on how nursing homes are trying not to disorient residents by sending them overnight to hospitals if their special needs can be handled in the nursing home or they can be sent to an outpatient faciity.

And, there is an interview with Henry Rayhons, the  husband  and former Iowa state legislator acquitted last week of charges he had sexually abused his wife who had Alzheimers.  The nursing home said they determined his wife was not capable of consenting to sex.  This story got national attention and raises a lot of ethical issues.   Regardless of all the details and circumstances, you have to wonder how the health care facility let this situation get to the point of putting the man on trial.  Perhaps they tried to resolve it in other ways, but it should have been.

Calendar of Upcoming Advocacy and Education Events

April 30 Albany Guardian Society sponsors the Village Movement:  Current Efforts in the Capital District, Carondolet Hospitality Center, Latham

May 5 Lobby Day to support Single payer “Medicare for All” health legislation A5062/S3525, Empire State Plaza, Meeting Rooms 2,3  Albany,

May 5 New York State Office for the Aging  Annual Senior Citizens Day and awards

May 6 Paid Family Leave Lobby Day, Room 711 Legislative Office Building, Albany

May 7 Annual Community Elder Law Forum, sponsored by Pierro Law Firm, Century House, Latham,

May 12 New York StateWide Senior Action Council Lobby Day, Empire State Plaza Concourse, Albany

May 13  New York State Alliance for Retired Americans annual meeting, NYS United Teachers, Latham

May 14 Mercy Care for the Adirondacks Annual Education Forum, Paul Smith’s College

May 28 White House Conference on Aging regional forum Boston

June 1,2 Assisted Living Federation of America (ALFA) lobby days at Capitol in Albany

June  9, 10  Aging Concerns United Us annual conference, Desmond Americana Hotel, Albany

Paid Family Leave Campaign to Have April 30 Statewide Teleconference with Perez, Gillibrand

The campaign to enact Paid Family Leave in New York State gets a boost on April 30 from national leaders at an event that will shown across the state.  National Paid Family leave champions, U.S. Labor Secretary Tom Perez and Senator Kirsten Gillibrand will be teleconferenced at each location to send a strong message to Albany that New York should be the next state to enact Paid Family Leave.

New York needs to pass Paid Family Leave so that workers are no longer forced to choose between economic security and caring for our families. We must #MakeNYNext!  Currenlty, New Jersey, California and Rhode Island have enacted Paid Family leave.

Please help spread the word.  Here are the locations around the state at SEIU offices where you can view the event.  For more information, contact Eric Williams at

Make NY Next: Locations

April 30th, 2015 @ 9:30AM

Albany @ 155 Washington Avenue/Albany NY 12210

Buffalo @ 2421 Main Street, Suite 100/Buffalo, NY 14214

Gouverneur @ 95 East Main Street/Gouverneur, NY 13642

Hicksville @ 100 Duffy Ave/Hicksville, NY 11801

Rochester @ 259 Monroe Ave., Suite 220/Rochester, NY 14607

Syracuse @ 250 S. Clinton Street Ste. 200/Syracuse, NY 13203

NYC @330 W. 42nd St, NY, NY

Patients, Caregivers Lagging Behind in Awareness of Rapid Health Care Changes; Hospitals Hiring Patient Satisfaction Officers

Commentary by Michael Burgess

The Affordable Care Act has introduced not only an expansion of insurance coverage to the uninsured but has launched a transformation of the entire health care system with incentives to improve outcomes and the quality of care.  Reform is literally changing the culture of doing business by hospitals, doctors and health care providers.  Payment reform is being linked to better outcomes such as reducing hospital re-admissions.

Patient satisfaction is now one of the key measures that reflects outcomes.  Hospitals have begun hiring “patient satisfaction officers” to undertake major initiatives to improve communications with patients and to solicit feedback.  In addition to the hospital experience, transformation includes better care coordination and post hospital care to prevent unnecessary re-admissions.

A key to the success of all these efforts must be the involvement patients, their families and caregivers.  Hospitals and doctors are fairly new to this “customer service” approach. And, even with the transformation underway, efforts involving patient satisfaction and communication are not as robust as those efforts actually involvement direct medical care.  Indeed it is overwhelmingly clear that the knowledge and awareness of patients, families and caregivers have not kept up with the dramatic transformations going on in health care.  Patients may have heard of the changes and received communications from providers but, by and large, “health care literacy” among patients remains low.  They do not understand, the nature of the changes and what the impact will be on them as patients and what role their families and caregivers will need to assume in care coordination.  Without this communication and understanding, health care providers run the risk of patients and families cynically thinking that all changes are tied to costs and savings rather than better coordination and outcomes.

It has been clearly shown though that more substantive change and success comes from maintaining very close and continued dialogue with patients. Health providers including doctors, hospitals and home health providers need to do more than just communicate instructions, they need to open a dialogue with patients, particularly older persons and those with limited English to understand what potential problems there are to a successful outcome. Indeed, greater communication is key to success and health providers need to work with community based groups representing patients and families  to increase their health care literacy.

Here’s a great article in the April 24 Albany Times Union on patient experience and satisfaction from Dr. Michael Brannigan of the College of St. Rose in Albany

Social Security Looms as Campaign Issue as Advocates Push Increase

Social Security advocates have stopped playing defense.  Now, they are going on offense and saying that just as the minimum wage should be hiked so should Social Security.   In fact 43 Senate Democrats went on record in mid-April to support increasing Social Security.  As the advocacy organization Social Security Works states, “Social Security expansion has gone from what many considered to be a fringe issue to being a core Democratic value along with raising the minimum wage and equal pay for equal work (both of which would strengthen Social Security in addition to being good ideas on their own).”

The divide between the parties is growing because a number of leading Republican candidates for President, especially New Jersey Governor Chris Christie are highlighting their advocacy of Social Security changes.  He advocated raising the retirement age to 69 and also to means testing the program.   Some Democrats continue to advocate raising the cap on earnings.  Currently the Social Security payroll tax is only levied on the first $118,500 of annual income meaning those with incomes above it get a tax cut in their paychecks when their annual incomes exceed that amount.  Democrats want to finance greater benefits for lower income beneficiaries with the added tax revenues generated by raising the cap.

President Obama had proposed the “chained CPI” which would have used a different measurement of inflation and would have lowered the annual increase.  He is no longer pushing this position.  Retirement security is one of four major issues to be addressed by the 2015 White House Conference on Aging this summer.

Senate Passes CARE ACT After Big AARP Lobby Effort; Assembly Next

The State Senate returned to Albany on Tuesday and passed the CARE ACT which requires hospitals to include a designated caregiver identified by a patient when they go to the hospital and for the caregiver to be given training and support for post hospital care.

The bill now goes to the Assembly where it is sponsored by Assemblywoman Linda Rosenthal.  Passage looks good there and the concept of the bill had the support of Governor Cuomo who included a Caregiver Support Initiative in his opportunity agenda released at the start of the legislative session.

According to AARP, “The Caregiver Advise, Record and Enable Act ensures hospital patients can designate a family caregiver and requires hospitals to offer that caregiver instruction and demonstrations of medical tasks they are being expected to provide for their loved ones at home, such as administering multiple medications, dressing wounds and operating medical equipment.”

AARP is making the bill its top legislative priority and launched a major statewide campaign that has included research, community forums, district lobbying and efforts at the State Capitol.  The issue has become more important as more and more older persons and other patients are being quickly discharged from the hospital after operations that previously would have kept them for several days.  Family caregivers in addition to home health aides are increasingly being expected to assist in providing care at home.  Care coordination is also becoming a major priority of health care transformation as Medicare and Medicaid are seeking to reduce hospital re-admissions.

To read more,  the news release is linked here.

Legislature Returns to Albany Amid Focus on Scandals

The State Legislature is returning to Albany today with nine weeks scheduled before adjournment on June 19th.  How much is accomplished in the coming weeks is very uncertain even though a number of key issues that Governor Cuomo included in his budget proposal such as the Dream Act, campaign financing reform and education tax cuts were separated from the budget for later action.  Also, the cloud of possible further scandals hangs over the Capitol with the New York Times reporting last week that Senate Majority Leader Dean Skelos and his son are being investigated by prosecutor Preet Bharrara for assisting businesses with interests before the state.  The Times also ran a major story today about some private financial dealings of new Assembly Speaker Carl Heastie.

There are a number of bills of interest to senior and health advocates that may be acted on in the next two months.  These include;

A3870/S3004 Assemblywoman Nolan and Senator Addabo are sponsors of the bill Paid Family Leave.  This bill passed the Assembly in March and the Senate Independent Caucus also supports it but had a different proposal in the budget that was not enacted.  The Senate Labor Committee led by Senator Jack Martins held a hearing on the issue on March 21st.
A1323-a/S676 Assemblywoman Rosenthal and Senator Hannon are sponsors of the CARE ACT pushed by AARP which requires hospitals to allow patients to designate and train a caregiver if post hospital assistance is required of them
 A4036/S2809 Assemblyman Quart and Senator Lanza are sponsors of this bill which enables pharmacies to synchronize prescriptions for the same day of the month  for patients
Other legislation to protect consumers access to prescription drugs such as restricting “step therapy” are part of the focus of an Rx lobby day next week.  Another bill of interest who strengthen efforts against financial abuse of the elderly requiring reporting of suspicious activity.  Details on these and other bills will be reported soon.

Number of Americans age 100+ Increased 93% from 1980-2012

The number of Americans who lived to age 100 has increased to over 61,985 according to the latest statistics from the Administration on Community Living of the Department of Health and Human Services.  This figure represented an increase of 93% from the 32,194 centenarians in 1980.

Here is the link to the profile on the older population from the Administration.

Current advances in health care and possible major increases in longevity resulting from cutting age research on genes are the subject of a new book, 100 Plus:  How the Coming Age of Longevity will Change Everything, from Careers and Relationships to Family and Faith.  The book is authored by Sonia Arrison, a senior fellow at the Pacific Research Institute.

Families Need to Monitor Nursing Home Expenses: Thousands of $$ Could be Lost

Paying privately for a nursing home can cost over $10,000 per month in New York State and most people cannot continue to do that before going on Medicaid. However, for those who do pay privately even for a short period of time, they are eligible to get a tax credit for the 6.8% nursing home surcharge that New York State imposes. Most people are not aware of this but it can add up to close to $8000 per year. State officials say this tax generates about $580 million. There is a New York State tax form IT-258 to submit to get back 6.0% of the tax. Even if the tax form is submitted the state is sending letters questioning the refund.

Another area of concern that can costs potentially thousands of dollars has occurred with prescription drugs. Most nursing homes use an outside pharmacy to handle both prescription drugs and over the counter drugs. One family reported getting hundreds of dollars in extra charges for drugs on top of the $11,000 nursing home bill every month. The drug costs were being charged even though the resident had coverage through Medicare Part D and the New York State EPIC program. While some of the costs for over the counter drugs were not covered by those programs, the nursing home’s pharmacy had never billed Medicare and EPIC for several months and just charged the patient. The pharmacy ended up having to issue hundreds of dollars in credits to the resident’s account, but that was only after the family questioned why they were being billed for the drugs and complained.

Here is a link to a Rochester’s WHEC TV story on the tax issue from April 16