Aimee's Bulletin

Aimee's Bulletin

WE REMEMBER

We honor the memory of Aimee Sandler on the First Anniversary of
Aimee's Bulletin. A milestone event for the State of Pennsylvania in 2011 at its publication, and now a milestone anniversary.

“Procedures for Surrogate Health Care Decision Making Bulletin #6000-11-01, January 2011,” is now known in the State of PA as “Aimee's Bulletin.”

“The Seasons of Love” RENT

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand moments so dear
Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?

In daylights - in sunsets
In midnights - in cups of coffee
In inches - in miles
In laughter - in strife

In - five hundred twenty-five thousand six hundred minutes
How do you measure a year in the life?

How about love?
How about love?
Measure in love
Seasons of love

Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand journeys to plan
Five hundred twenty-five thousand six hundred minutes

How do you measure the life of a woman or a man?

In truths that she learned
Or in times that he cried
In bridges he burned
Or the way that she died

It's time now - to sing out
Tho' the story never ends
Let's celebrate
Remember a year
In the life of friends
Remember the love

Abigail Sandler can tell you how you measure, measure a year. Three years. A LIFETIME. Especially when it came to her beloved and cherished sister, Aimee. A sweet spirit of a child who grew into a young woman with profound challenges in her life. Here is what Abby shared about Aimee’s life and how Aimee's Bulletin came to pass.

“My beloved sister, Aimee, was profoundly physically and developmental disabled for a good part of her life. She was my little sister and I loved her more than anything. As adults we still were a potent sister act and I was her advocate ~ the captain of her ship and we were often in dangerous and stormy seas, frequently threatened by adversity and ill will. Aimee sadly lost her gallant battle at the age of 53 and passed away on Feb. 9, 2009, three years ago. Aimee was a warrior and I was the tough sergeant helping fight her battles. Medically fragile in the spring of 2006, Aimee became acutely ill, requiring Hospice Care on two occasions, and a variety of herculean efforts were put into effect to keep her comfortable and manage her care.

While fighting for the very best and timely care for Aimee, we found ourselves ‘being bullied’ by Aimee's group home provider and refused appropriate medical care that was in her best interest for a quality of life. Aimee's group home provider was being paid by the State of PA to care for Aimee, and the provider wanted to determine Aimee's End-of-Life care and decision making process, which clearly presented a conflict of interest. The question I had was WHY NOT THE FAMILY? And so I went to Harrisburg to change the way ‘things were done’.

From 2006 until Jan. 15, 2011, all things changed in Harrisburg, PA for special needs individuals with the signing of Aimee's Bulletin. Behind the signing was who we called ‘Aimee's Team’ a group of advocates ~ people in similar family positions as well as legal, medical and government supporters whose mission was to insure that no Special Needs Individuals in the Great State of Pennsylvania would ever have to endure the conflicts and care issues that Aimee and her family endured and fought due to the lack of clarity around the End-of-Life decision making process for Special Needs Individuals.

The Bulletin stated that families would decide how loved ones could, would, and should receive certain quality of life medical, intervention and palliative care. Not institutions, not government. But families speaking for their loved ones, who more often than not, had no voice of their own. I am grateful that in Aimee’s memory, at this First Anniversary of the signing of what is now known as 'Aimee's Bulletin' and the third year anniversary of Aimee’s passing, that she lives on in an important way and continues to be valiant in making a difference in the lives of thousands of special needs individuals today, and hopefully in the future.” 

 

Peggy Dolan, Founder/Executive Director, Kelly Anne Dolan Memorial Fund, Member of Aimee’s Team, Member of the Pediatric Palliative and Hospice Care Task Force/Patient and Family Issues Sub-Committee, Harrisburg, PA; Recipient of Viktor Frankl 2005 Humanitarian of the Year Award from the National Association of Home Care and Hospice, Washington, DC, Great Friend to Kids Award from Please Touch Museum, Philadelphia, Martin Luther King, Jr., Memorial Award from the Wissahickon, PA Faith Community Association, Hometown Hero Award from the Philadelphia 76ers, People Magazine 2005 "Hero Among Us” Award and the 2004 National Caring Award by The Caring Institute, Washington, DC and induction to the Frederick Douglass Museum and Hall of Fame for Caring Americans.

February 1, 2012
Dolan shares: “Dignity and caring is the heartbeat of Aimee’s Bulletin. A rhythm as natural as life and death itself. Respect and compassion for the bonds of family and comfort for the terminally ill is the simple formula for end of life issues for those unable to speak for themselves. Abby Sandler’s determination and drive to spare families unnecessary and stressful conflicts related to the final days of a severely handicapped family member, has triumphed in the directives of Aimee’s Bulletin. Abby and her beloved sister Aimee’s lives are reflected in the words of the great Elisabeth Kubler-Ross’ – “What do dying people teach us? They teach us how to live.” Abby and Aimee’s fortitude, strength, adoration and loyalty are celebrated in the directives of Aimee’s Bulletin for the benefit of families in similar situations throughout the state of Pennsylvania.”

 

There are many kinds of battles in life. Good soldiers are needed to fight for the rights of those needing protection, and who might not be able to fight for themselves. These soldiers will get into the trenches united in strength of numbers, powered by focus, fortitude and personal artillery called heart and soul, sometimes blood, sweat and tears. It is those soldiers that we see as proud warriors for the good cause that came to pass. Each in their own way, as well as part of a team, fought to see that Aimee's Bulletin was written and published to protect and help those in a battle of attaining legal family rights. We thank and award these exceptional and honored soldiers on “Aimee’s Team”, and all who helped make a difference, the Purple Heart of Courage.

 

Estelle B. Richman, Past Secretary of Public Welfare, Pennsylvania, Member of Aimee’s Team, Served as Secretary for the Pennsylvania Department of Public Welfare for seven years. She also served as Managing Director for the City of Philadelphia and previously Director of Social Services for the City of Philadelphia. Other positions held by Richman include the City of Philadelphia's Commissioner of Public Health and Deputy Commissioner for Mental Health, Mental Retardation and Substance Abuse Services; and Assistant Director with the Positive Education Program in Cleveland, Ohio, a day treatment program for children with behavior problems. A nationally recognized expert on issues of behavioral health and children's services, Richman has been honored for advocacy efforts by the National Alliance on Mental Illness, the American Psychiatric Association and the American Medical Association, among others. She is also the recipient of the 1998 Ford Foundation/Good Housekeeping Award for Women in Government. In addition, the Behavioral Health System named her the winner of the 1999 Innovations in American Government from the Kennedy School of Government, Harvard University.

 

February 3, 2012
Richman said,
  “Severely developmentally disabled individuals are people who need assistance in the life affirming decisions when they themselves have no voice. In real life people take risks. This bulletin is not about law and liability. It’s the story of family members making critical choices about another family member’s life. The family should be allowed to make those decisions and give their loved ones a chance at life, and an opportunity be in an nurturing, dignified environment. For most disabled individuals an appointed guardian or a family member will be making the decisions.  Aimee’s Bulletin puts the risk with people who truly care, a family member or legal guardian. It’s real people deciding, an appointed caregiver, a family member, the legal guardian and the individual with the  developmental or physical disability need. Together, they make the crucial decisions for the special needs and care.”

 

Sue & Hector Badeau, Sue and her husband, Hector, are the lifetime parents of twenty-two children, two by birth and twenty adopted (two, with terminal illnesses, are now deceased). Members of Aimee’s Team, they have also served as foster parents for more than 50 children in three states, and as a host  family for refugee youth from Sudan, Kosovo and Guatemala.  Recently, their 30th grandchild and third great-grandchild were born.  They have won numerous awards for their work, including being recognized by President Clinton with an “Adoption Excellence” award for their work on  behalf of adoption and children in foster care. Sue and her family are currently working on plans to create The Badeau Manor as a place of respite for parents and caregivers of children and adults with special needs.

February 8, 2012
Badeau said,
“Families caring for children, siblings or other family members with significant special needs and developmental disabilities have learned one of life’s great truths:  these individuals enrich, enhance and add deep joy and meaning to the lives of everyone they touch.  Far from being a burden, these family members hold a unique role within the tapestry of each family. Thus, when our beloved family members, such as Abby Sandler’s sister Aimee, or our own sons Adam, Dylan and Wayne, become ill or approach the time of their death, it is essential that we have the ability to come together, with the medical, social work and other professionals in their lives to make wise, well-informed and compassionate decisions for their care.  It is when the caring family and the team of professionals are able to pool their collective expertise, that the best decisions can be made, together.
Aimee’s Bulletin
makes a difference.  It provides clear guidance for both the family and the helping professionals to ensure that special needs individuals have a voice and are treated with care, dignity and respect, and allowing the family to be the final decision maker.  It is my hope that through public awareness, training and education, Aimee’s Bulletin will be made known to all families in need."

 

Kevin Casey, who served as Past Deputy Secretary, Office of Developmental Programs, Harrisburg, PA, Member of Aimee’s Team

February 10, 2012
Casey said,
"The Department of Public Welfare and the Commonwealth of Pennsylvania would like to thank Aimee and Abigail Sandler for all their attentiveness to the issues surrounding this bulletin and their drive and efforts to make this bulletin a reality. Courage runs in the family, Abby. Aimee provided the inspiration, you did much of the work."

 

Vicki Stillman-Toomey, Regional Program Manager, Department of Public Welfare, Office of Developmental Programs, Philadelphia, PA, Member of Aimee’s Team

January 27, 2012
Stillman-Toomey said,
“The Bulletin, Procedures for Surrogate Health Care Decision Making Bulletin #6000-11-01, issued, January 15, 2011," inspired by Abby's and Aimee's experience, was intended to strengthen and clarify the roles of families and other parties in making healthcare choices for adults with intellectual disabilities. As a result, in the last year since it's signing, my office has experienced that the providers and county Intellectual Disabilities offices are better informed about the requirements of Act 169 and the substitute decision making process. The clarity provided in the Bulletin regarding the role of family members and the hierarchy of people who are able to support individuals in end of life decision making, has also reduced conflicts. Additionally, communication with hospitals and physicians has been enhanced by having clear and concise information of the Act and the relationships of families and providers in the system available. This Bulletin recognizes the rights of people with disabilities and their families when facing end of life decision making."

 

Chris Feudtner, MD PhD MPH, Director, Department of Medical Ethics, Director of Research & Attending Physician, PACT (Palliative Care Team) & Integrated Care Service (ICS), Children's Hospital of Philadelphia, Member of Aimee’s Team

January 25, 2011
Dr. Feudtner said,
"For all of us, Aimee’s Bulletin underscores the importance in thoughtful and thorough evaluation of the medical conditions of these (and all other) individuals. A great dividing line in the Bulletin is between persons who do and persons who do not have end-stage medical conditions. I continue to worry that there is quite a bit of subjectivity in the definition of "end-stage", and that this remains a loop-hole for those who do not wish to confront the fact that a person is dying.”

 

“What is an anniversary?” a child asked his mother. “An anniversary is a celebration of something meaningful. A birthday. A wedding. Sometimes something sad like when someone dies and goes to heaven.” “Is an anniversary forever”, the child added. “We hope so,” said his mother.

 

The First Anniversary of the signing of Aimee's Bulletin has been celebrated.

It is the intention of Aimee's Team on this, the First Anniversary of the signing of Aimee's Bulletin, to once again join hands with Harrisburg, and initiate Phase Two, the training and education of the families of so many families and their physically and developmentally disabled loved ones, with what they need to know to protect their rights.

Right now, few families in the Great State of PA know anything about the End-of-Life decision process for their loved ones who face physical and developmental challenges, sometimes death. We need to insure that not a single family goes through what Aimee and her family endured, at a time when understanding, compassionate care and greater clarity should have been provided. 

At this First Anniversary of the signing of Aimee's Bulletin, we honor Aimee's memory with her fortitude to survive adversity. We remember her radiant smile, her brilliant sense of humor and the many meaningful ways in which Aimee touched the lives and hearts of all who knew her. Continuing to fan the flame of the future for other physically and developmentally challenged individuals in the State of PA, we acknowledge that the future is NOW. We are hopeful that a Patient’s Bill of Rights in PA is the next step in this great journey that began with Aimee Sandler, and has continued with Aimee's Bulletin.