Woman With Dementia Still in Jail; Bill Would Prevent Mid-Year Drug Plan Changes

Escalating drug prices continue to be the biggest source of complaints by health care consumers.  This country does not have the ability like others with national health plans to more strictly control or negotiate drug prices so we have seen prices skyrocket this year.  Insurance companies are trying to control the costs which they have not been able to predict very well, resulting in big impacts on their bottom line.  These increases have  also can caused trouble for people with serious illnesses.

The Health Care for All New York (HCFANY) is concerned about changes in drug plan formularies which can occur in the middle of a plan year after subscribers have been locked into the plan.  The coalition will be supporting legislation sponsored by Senator Jack Martins and Assemblywoman Crystal Peoples-Stokes that would restrict the changes.  The coalition says their bill A.7707/S.538 would prevent health plans from removing a drug from a formulary in the middle of the year, or moving it to a higher co-pay tier or imposing new utilization management restrictions.  The ill provides an exemption if a generic drug of similar quality is added to the formulary during the year.

While this bill makes sense we must continue to challenge the high drug prices which I have noted before are no longer based on research and development costs but on what companies can get away with.  Why would they sharply increase prices for old drugs which they developed years ago?


The older woman with dementia I have mentioned on two occasions who was in the Albany County jail remains there as Thanksgiving approaches and it’s been close to two months for her.  Everyone says it is because they don’t have a place that will take her since she can’t live alone.   The county could have put her in the county nursing home at least temporarily.  What does that say about our health care system and about a person’s human rights?  What it says is, “We failed,  this is the best we can do for a  person  whose dementia caused her to commit a non-violent crime– jail.”

Whenever I speak to people at the county or state level they talk about rules and regulations and impediments about why she hasn’t gotten out of jail.   No one has accepted responsibility to look after her best interests, help her family and get her out.  No case management and lot of passing the buck.   All the talk of care coordination and breaking down silos in government is just talk if a case like this can’t be handled better.

Hopefully she will be placed somewhere in a memory unit soon just as she should have been weeks ago.  That won’t be the end of the story though.   A big review of this case is needed along with changes in how our agencies respond.





SOFA Re-organization, Paid Family Leave, Waiting Lists, Caregiver and In-Home Support are Top Issues of Legislative Activity for Senior Advocates in 2016

Several major issues, some remaining from the last legislative session, will be the focus of senior advocacy in 2016.  Paid family leave, the possibility of the  State Office for the Aging becoming the Office for Community Living,  as well as funding increases for senior programs are the top issues for advocates.  In addition, advocates are focusing on health related staffing issues such as safe staffing in hospitals and nursing homes and establishing an Advanced Home Health Aide Program.

AARP has already announced its focus will be on pushing for $55 million in new spending on senior programs including a $30 million investment in the State Office for the Aging funding to support caregivers.  It also wants increased funding to eliminate waiting lists for key community services such as the EISEP program (Expanded In-Home Services for the Elderly).  AARP is also advancing paid family leave and the establishment of the Advanced Home Health Aide Program along with age-friendly communities in New York State.  There is also a bill being pushed by the Center for Aging in Place in Westchester to create and Aging in Place Task force at the state level.

A recommendation may be made in the Governor’s budget to transform the State Office for the Aging into an Office of Community Living.  The Legislature would have to approve a final plan and the proposal has been controversial.  Many disability advocates are pushing for the legislation because they feel their concerns would be better addressed by being part of such a new Office of Community Living.  Reservations have been expressed by some senior advocates and compromise counterproposals or amendments are being discussed to strengthen the State Office’s focus on state level advocacy along with strengthening support for family caregivers and livable communities and neighborhoods, all of which benefit both seniors and the disabled.

The Paid Family Leave Coalition is hoping that legislation is finally passed in 2016.  The Assembly passed a paid family leave  bill earlier this year to establish such a program through the state’s disability insurance program.  Senate Majority Leader John Flanagan is open to considering it though he and other senators want it to be paid by employees.  The issue will be considered at the same time as Governor Cuomo and labor and community advocates push hard to increase the minimum wage to $15 per hour over six years.  There is some concern that legislators will not want to hit business with both measures though the minimum wage would not take effect fully for three years in New York City and six years in upstate New York.

Meanwhile, New York State is ground zero in the fight over physician assisted suicide after California passed the bill into law earlier this year.  Advocates are planning a major campaign for a similar bill here.  However, a broad coalition is mobilizing against it led by disability organizations, church groups, the State Medical Society, hospice supporters and senior advocates.  Senior advocates are concerned the bill would put growing pressure on seniors with terminal illnesses to end their lives.  New York State is 48th in the country in the use of hospice services which advocates believe should be promoted rather than suicide.  Also, many people choosing to end their lives are depressed and the bill proposed does not adequately provide for mental health assessments.   Many in states like Oregon said they wanted to end their lives because they felt there were a burden or they had lost their independence rather than because of pain issues.

Statewide Caregiver Conference Hears from Three Dynamic Experts; Alzheimers Funding Announced

November is Caregiver Month and about 150 persons attended the annual conference of the New York State Caregiving and Respite Coalition at the Desmond Hotel on Tuesday.  Participants heard three, nationally known,  dynamic speakers and a panel of persons directing local caregiving programs in New York State.   Peter Rosenberger was the keynote speaker.  He is a radio personality with a national show on IHEART radio.  He has been taking care of his wife for many years and is an author and lecturer on caregiving.  His website is caregiverswithhope.com

Carole Levine who runs the Next Steps in Care project for the United Hospital Fund traced the history of caregiving and why more and more persons are becoming caregivers due to changes in families.  She has developed a number of very helpful manuals which are on her website.   Her website is nextstepincare.org

Sheila Warnock of Share the Care talked about how her organization was founded and  how it helps to promote caregiver circles of family members and friends.  She spoke about “No One Should Have to go it Alone.”    Go to sharethecare.org to see how to organize caregiver support groups.

In other news regarding caregiving, Governor Cuomo announced on November 5 the selection of local providers for a 5 year $67.5 million program to assist caregivers of  persons with Alzheimers disease and dementias.

Here is the link to that announcement  http://www.governor.ny.gov/news/governor-cuomo-announces-675-million-support-caregivers-individuals-alzheimer-s-and-other

Decline in Longevity for Middle Age, Low Education Whites Linked to Suicide, Alcoholism, Substance Abuse

As an advocate on aging and health issues, I have been especially interested and proud of the gains the United States has made in longevity. Men and women are living much longer than ever before. Successes in public health such as better medicines for heart disease as well as a huge reduction in smoking have been key to this change as well as the general infrastructure of support for prevention, aging and health services.
Now, though comes a wake up call about changes afoot that have nothing to do with our programs and services for older Americans.  More low income white Americans are not even making it to old age.  There is a very noticeable increase in middle age deaths of whites without a college education.  There has been no corresponding increase in death rates for African Americans, Hispanics or other groups.

What is going on? It is not about cancer or heart disease or diabetes. Deaths from suicide, alcoholism and substance abuse are the reasons according to the study by two Princeton researchers reported last week.  The increase in the death rates for these middle age whites increased 22% or at a rate only comparable in recent history to the AIDS epidemic.

The persons in this age group with only a high school education were reporting higher levels of pain as they aged which could be related to increases in obesity and a poor diet.   They also are bigger users of opioid pain medicines, more than African-Americans and Hispanics, the report noted.   This could explain why those groups did not have a similar increase in middle age deaths.  African American deaths in middle age are still higher than Whites but the gap is closing and Hispanics are lower than both.

The report also said that the income of this group of people had dropped by 19% in recent years.  This change is another result of the decline of the middle class and the loss of manufacturing jobs in smaller towns. I was born in the village of Massena and last week, Alcoa, the major employer where three generations of my family worked, announced it is closing a large part of its operations and laying off nearly 500 people.
It is heartbreaking to hear this news but then to see what the impact could be in terms of the lives of those who want to stay in the communities they grew up in.
So, sadly we have people who don’t even make it to older age. We need to think about all of this as we look at the need for better jobs and raising the minimum wage. Yes, that’s true, because if the jobs that are left are as cashiers and greeters at chain stores or short order cooks at restaurant chains then people are going to need a livable wage to survive and have a better quality of life.  Clearly, these new findings reveal a growing segment of the population with low incomes that is very unfulfilled, depressed and suicidal.  It is imperative that we develop community responses to address all the economic, social, cultural and even spiritual issues that are responsible for these changes in society.

Albany County Woman with Dementia Remains in Jail

The older woman with dementia I wrote about over two weeks ago who was arrested and put in Albany County jail is still there.  This is one of the most glaring failures and indictments of our health and human services systems I have ever heard of.  Fortunately, steps are being taken to place her in a local nursing home as soon as a bed is found.   If it wasn’t for the persistence of her friends, her family lawyer and the intervention and collaboration of advocates and the Alzheimers Association, she might be languishing in jail even longer.  It was because of the failings of the Albany County  adult protective services staff that others had to step in and get a plan for the woman to be released.  The county staff apparently was just letting the case be handled in the courts rather than being proactive and try to find a solution.  They felt she was safe in jail and they saw no need to expedite a referral and placement elsewhere.  I know this because  an inquiry I made revealed that Albany County adult protective services does not even have an open case or caseworker assigned to this woman.

Let me be very clear about this:  this woman’s human rights have been violated.  She has been in jail for over a month.  It has been almost three weeks since a mental health evaluation revealed dementia.  The social services administration in Albany County has opted for jail as a housing and treatment strategy for this woman rather than expedite a solution.  For all the talk of care coordination and supporting family caregivers, the woman’s son was left alone without calls and emails returned.   He was promised a plan of action three weeks ago and never heard anything further.

After she gets out of jail and is settled, I will be working with others to get a thorough review and high level of investigation of Albany County’s handling of this case as well as exploring a formal action to determine whether the human rights of this woman in her 60s with dementia were violated.  No investigation is needed though to determine that this woman and her son have been treated disrespectfully.

It is up to all of us to be advocates for our family member and friends.  Never assume that the “system” is going to always protect the vulnerable.  There is not an intention to do harm, but I think we constantly have to speak up and say this is not the way we would want our own mother or relative or friend to be treated.

Mike Burgess

CARE ACT Signed into Law; Can it Make a Difference?

Governor Andrew Cuomo signed the CARE ACT (Caregiver Advise, Record, Enable ACT) into law on October 26 and it will become effective in 180 days, requiring hospitals to allow patients to designate a caregiver and to provide training for caregivers to use with the discharged patient.  The bill sponsored by Senator Kemp Hannon and Assemblywoman Linda Rosenthal was a top priority of AARP and was supported by other senior and health advocacy organizations.  It passed unanimously in both houses of the State Legislature in the spring.  Its unanimous passage undoubtedly resulted from the fact that hospital lobbyists supported it and said they were already doing what the bill requires.

In fact, to have opposed this bill would have made no sense, because hospitals are going through changes which are giving incentives for care coordination and penalties for unnecessary re-admissions.   To achieve those goals hospitals, doctors, health systems and insurers should be investing staff time and resources into all efforts to improve post hospital care and to support the role of patients, families and caregivers. There are 2.6 family caregivers in New York State and this law is important because with more outpatient procedures and shorter hospitals visits they are called upon to do a lot more than in the past.

So, the question will be what will change when the actual provisions go into effect?  A caregiver’s name, phone number and address will have to be kept on the record, so that should be helpful though hospitals should have spouses, next of kin and health proxies already in their databases.   The hospitals will have to be more formal in the training they provide to caregivers on the way out the door.  With the rush of discharge planning, instructions are required to be given on paper about after care, but the new law requires a demonstration of how to provide care for the caregiver.