November 18, 2013
Today is an exceptional day for Aimee's Team and the entire Special Needs Community in the Great State of Pennsylvania.
This morning, Fred Lokuta, our state's Deputy Secretary of Developmental Programming announced that in collaboration with Celia Feinstein, Co-Director, Institute on Disabilities, at Pennsylvania's University Center for Excellence in Developmental Disabilities, at Temple University, the state will be coordinating and conducting statewide training on Aimee's Bulletin. Ms. Feinstein will coordinate efforts with ODP so that training can occur ASAP.
This anticipated training will help ensure - in clear and certain terms- that healthcare providers consider a family's wishes when determining medical treatment for adults with Special Needs. This training is intended to prevent the confusion and upset that currently plagues so many of our Special Needs families while attempting to care for their medically fragile, loved ones, in critical situations. Knowing and understanding Aimee's Bulletin is vital, prior to an actual medical emergency, so when and if a medical crisis should occur, family members are better equipped to address the issues and negotiate the system, with a knowledgeable and available advocate by their side.
Aimee's Team salutes Deputy Secretary Lokuta for his compassionate understanding of the delicate issues at hand, and for recognizing the necessity for taking action in such a way as to support our Special Needs Community and their families. In addition, Deputy Secretary Lokuta also has plans to make this training available for our Spanish-speaking Special Needs Community, to ensure they also have access and an understanding of Aimee's Bulletin.
April 25, 2013
Today, we traveled to Harrisburg, PA, our state's capital, to continue advocating for those who are unable to advocate for themselves. Going forward, Aimee's Team will become part of a larger team consisting of the state's finest professionals, under the direction of Fred Lokuta, Deputy Secretary for Developmental Programs, and Vicki Stillman-Toomey, Regional Program Manager for Developmental Programs.
As a result, we hope to be better able to communicate Aimee's Bulletin (Procedures for Surrogate Health Care Decision Making Bulletin #6000-11-01/January 2011) to our special needs families and their providers.
Aimee's Team Meeting Update: Department of Public Welfare, Health & Welfare Bldg., Harrisburg, PA
Left to right: Vicki Stillman-Toomey, Southeast Regional Program Manager,
Patricia McCool, Director, Division of Community Services, Bureau of Community Programs,
Sue Badeau, Aimee's Team, Family Advocate,
Abigail Sandler, Aimee's Team, Family Advocate,
David Kauffman, Executive Administrative Assistant, Office of Developmental Programs,
Kevin Friel, Deputy Secretary, Office of Developmental Programs, Department of Public Welfare,
Dr. Jill Morrow-Gorton, M.D., Medical Director
Just wanted to let you know that as of today, in Harrisburg, Aimee's Team initiated plans for Phase Two of Aimee's Bulletin, and will be moving forward, in partnership with Kevin Friel, Deputy Secretary, Office of Developmental Programs, Department of Public Welfare, and his excellent, devote and compassionate professional staff.
We're very grateful to have such a wonderful, dedicated team in Harrisburg, committed to truly making a difference and helping those who can't help themselves.
A VALENTINE'S DAY HOME RUN ON A DAY WHEN THE WORLD IS WEARING RED!
On February 14th, Valentine’s Day around the world ~ the day when RED RULES and chocolate is the gift of choice, red and chocolate being Aimee Sandler’s two favorite things when she was alive, and less than one week after February 9th, the two year anniversary of Aimee’s death, TODAY Aimee’s heart-warming story gets published on the Front page and Page 2 of The Philadelphia Inquirer, Health & Science, Section E.
Jan. 13, 2011
Department of Public Welfare Issues Guidance to Give Families a Stronger Voice in Care of Adults with Special Needs
Harrisburg - The commonwealth has issued a bulletin intended to strengthen and clarify the roles of families and other parties in making healthcare choices for adults with special needs, acting Secretary of Public Welfare Michael Nardone announced today.
“Pennsylvania has numerous laws addressing surrogate healthcare decision-making for adults with special needs, and this has, at times, led to inconsistent practices that can limit the voice of families when it comes to making critical decisions about the care of their loved ones,” Nardone said. “Families and other caregivers deserve clarity when making such decisions, and this bulletin is intended to provide that clarity.”
The bulletin does not change existing laws regarding the role of surrogates in making healthcare decisions, but it will help to ensure - in clear and certain terms - that healthcare providers consider a family’s wishes when determining medical treatment for adults with special needs, Nardone said.
The bulletin accomplishes two significant objectives:
The clarifying bulletin has been named “Aimee’s Bulletin” by advocates for adults with developmental disabilities in memory of Aimee Sandler, a Montgomery County woman with severe physical and mental disabilities who died in 2009. Her sister, Abigail Sandler, was a driving force behind the efforts to clarify rules for care of adults with special needs.
During the last several years of her life, Aimee’s medical treatment was the subject of disagreement between her family and her healthcare providers, leading to undue stress and tension for all involved, Nardone said. The bulletin will help ensure other families do not have to endure such difficulties.
The clarifying language – formally called the Procedures for Surrogate Healthcare Decision Making Bulletin – will become effective on Jan. 15.
For more information on programs and services for people with special needs, or to learn more about the Department of Public Welfare, visit the department’s website at www.dpw.state.pa.us.
Media contact: Michael Race, 717-425-7606