The Sarah House board of directors are very pleased to announce the creation of “Sarah’s Law” which was passed through Ohio Legislation and became effective on March 20, 2013. The following is a brief description of Sarah’s Law:
Pediatric respite care programs
- Requires the Ohio Department of Health to regulate pediatric respite care programs, which are programs that provide services to patients under age 27 who have been diagnosed before age 18 with life-threatening diseases or conditions that shorten life expectancy.
- Establishes a licensing process for pediatric respite care programs that is similar to the Department's existing licensure process for hospice care programs.
- Names the licensing provisions as "Sarah's Law.
Click on the link to learn more about Sarah’s Law:
Sarah's Law: The Story of How HB 303 became a law
The Sarah House Board formed at an impossible time in the financial history of our country. In 2007-2008, no one in the Midwest was willing to support an organization who was new, a non-profit, and had no potential to make money to be self-sustaining. However, we had the drive and commitment to try. We believed the need for a Pediatric Respite Care Facility was so great, we decided to move forward. After several failed attempts at partnerships with other well-established non-profit entities, we decided to move forward.
We soon realized there were no current licensure rules which applied to our goals as a facility. Through the guidance of a consultant, and a lobbyist, we were able to connect with Representative Maag, and a bill was presented to establish licensure for a Pediatric Palliative Respite Care Facility. Three Board Members, Kim Mercier, Barbara Ford, and Rebecca Stringer were able to testify to the Ohio House and Senate Committees on Health and Aging in 20.., a daunting experience. None of us had experience in this. But we all spoke from the heart, and from a belief of the need for this type of a facility. Kim's daughter, Sarah, had cancer and died in a hospital setting. Not optimal, but all that was available to them. Rebecca's daughter was cared for at home for an extended period, by a home health aide and herself. When she needed temporary placement, there was nothing available. Barbara, as a member of the Starshine Hospice Board, knew first hand of the families who could benefit from respite stays and also knew this was not available. Their testimonies were moving and the establishment of a Pediatric Respite Care Facility was passed unanimously. The support of the Sarah House Board through this was paramount. We felt we had attained the achievement of a lifetime.
However, the question of reimbursement still exists. Switching to the first person, I recently heard a talk by one of the pioneers of Hospice Care in America. As a Hospice nurse for 25 years, I have been blessed to hear talks from Elizabeth Kubler-Ross, Dr. Robert Tycross a pioneer for Hospice care in England, and Dr. Ira Byock a physician pioneer in Hospice and Palliative Care in the US. The talk I heard recently, from Dr. Hugh Westbrook, and his efforts to bring Hospice to the US, so parallel the efforts of Sarah House in Ohio. They had a difficult struggle, but they were fortunate that they had Medicare to draw from. And so the Hospice Medicare Benefit was born, which included a respite benefit. As a pediatric organization, we have only to rely on Medicaid or private insurance. In the 80's there were fewer people qualifying for Medicare. However, now the Baby Boomer's have reached Medicare eligibility. Many of us have cared for children with disabilities, or have grandchildren with disabilities, and we are a powerful political force. As Baby Boomer's it is our responsibility to insure the future of this country for our children and grandchildren, and we must not ignore the most vulnerable of our population and those who care for them.
Sarah House wants to offer a valuable service. But we cannot do it alone. We need contributions and support from people who recognize the need for this service. Please help us in our mission.