Frequently Asked Questions
INTRODUCTION TO LADYBUG HOUSE
The vision of Ladybug House is to build a home that will support children, adolescents, and young adults with life-limiting illnesses, and their families.
Our goal is to open a freestanding, independent home-like facility with 12 family suites where families can receive support and a place to rest and have a break from being the caregivers 24/7 and if needed an option for end-of-life care outside of the hospital in a home environment.
Families will be welcomed to stay at Ladybug House together or they may have time away while their child spends time alone receiving loving professional care. This allows families the opportunity to concentrate on being parents, siblings, grandparents, etc. while the Ladybug House staff attends to the daily needs of the child. Ladybug House will meet the needs of the families as they define them. Physical, emotional, psychological and spiritual needs will be addressed.
What is Ladybug House?
Ladybug House will be Seattle's first home for children, adolescents and young adults, offering rest and rejuvenation to families (respite), and if needed, an option for end-of-life support in the community. Ladybug House is a non-profit, 501(c)(3). Daily care that would otherwise be provided at the child’s home will be provided at Ladybug House, we will offer a home-like environment that differs from the hospital environment.
What is Pediatric Palliative Care?
Pediatric palliative care is an approach that improves the quality of life of patients and their families facing the challenges associate with life-threatening illnesses. It focuses on providing patients relief from pain other symptoms – whatever the diagnosis. Palliative care is provided by an interdisciplinary team of specialists including doctors, nurses, therapists and other specialists working to provide an extra layer of support.
Palliative care is appropriate at any age and at any stage in a serious illness and can be provided together with curative treatment.
What is Respite Care?
Respite is short term care to relieve the child’s family or other persons caring for the patient. Families often provide extraordinary, around the clock, continuous care to their child for days, weeks and years without any “time off” or a “full-night’s rest.” Ladybug House will give families a chance to physically and emotionally recharge so that they can continue to provide the high level care their child needs.
What are Life-threatening or Life-limiting Conditions?
Life-threatening and life-limiting conditions are often used interchangeably. They most often refer to a diagnosis or condition that is not responsive to curative treatment and often mean that a child has a shortened life expectancy. Some conditions may include various malignancies/cancers, rare genetic or chromosomal disorders, heart/lung conditions, rare neurological conditions and complex chronic conditions. Examples include:
Cystic Fibrosis is a recessive genetic disease that affects the entire body, causing progressive disability. Difficulty breathing is the most serious symptom resulting from frequent lung infections.
Duchenne Muscular Dystrophy is a hereditary disease that weakens the muscles that move the body that more commonly affects males.
Neurodegenerative Conditions affect children in varying degrees but lead to an unfortunate progressive decline and loss of previously gained milestones. This usually progresses to intractable epilepsy (seizures) and loss of interaction with the outside world.
Rett Syndrome is a neurological disorder of the grey matter of the brain which affects head growth, loss of hand use, stagnation and regression of previously acquired skills. Affects females more commonly and are prone to gastrointestinal disorders and seizures.
Spinal Muscular Atrophy is a neuromuscular disease that results in progressive muscular atrophy (wasting away) and weakness. Requires comprehensive medical care and therapies.
Is Ladybug House a public charity?
Yes. Ladybug House is a Washington nonprofit corporation we received our 501(c)(3) status from the IRS in October of 2013 our tax ID number is #90-1020508. One hundred percent of donations are used for the development of the infrastructure, programs and services of Ladybug House. Donations are tax deductible to the full extent permitted by law. Please consult your tax advisor with questions about tax deductions to public charities.
Is it like the Ronald McDonald House?
No. Ronald McDonald House is a valuable service to the community, it provides lodging for families while children are in the hospital. There are no specialized medical or supportive services provided.
Are hospice services provided at Seattle Children’s hospital?
Seattle Children’s has an in patient palliative care team but there are no outpatient hospice services provided by Seattle Children’s Hospital.
How do you plan to work with the hospitals? Will they have a stake in this?
Seattle Children's, Mary Bridge Children’s Hospital, Providence and other local hospitals agree that there is a great need for respite and end of life support outside the hospital. It is our goal to work collaboratively with all of them.
As part of our governance structure, we will have a multidisciplinary Advisory Council that represents an interdisciplinary team of professionals from various pediatric healthcare organizations in the Seattle area. As we work to build our board the goal is to have representation from various facilities.
At this time, local hospitals have not contributed financially, but it is our hope and plan that over time, each hospital will contribute a portion of the operational costs, as this home will serve children cared for by each organization.
How will reimbursement work?
Ladybug House legal team is committed to understanding what will need to be in place in order to access reimbursement in the future. Because this home and the model for this home has not existed in our state, there are many details to be understood – including the most appropriate state license for the home – so that children can stay for both respite and, as needed, at the end-of-life. In order for this model of care to be sustainable in the future, it will be essential to access reimbursement through Medicaid or private healthcare insurance plans in the future.
Ladybug House has learned from Ryan House in Arizona and George Mark Children’s Home in California that as they navigate this discussion on an individual, case-by-case basis, they are slowly accessing some reimbursement for end-of-life care. Primarily, these homes, similar to those in the United Kingdom, Canada and Australia are funded by philanthropic funds.
Children do not access Medicare the same as adults do in order to receive respite or hospice support. Furthermore, adult hospice homes frequently operate on a fee for service. It is our goal to offer respite and end-of-life care to children and families at no out of pocket cost. This is because we do not want to turn families away and know that many families who have a child with a life-limiting condition have often exhausted all of their financial resources and have tapped into their long-term savings to look after their child. This model differs from the adult residential hospice model.
Providence also has a children’s hospice. What makes Ladybug House different?
Providence has an amazing program called Stepping Stones. It is a home visitation program. Many people think home hospice is 24/7 support, when in fact it is most often a weekly visit from a nurse to help the family manage the care. Social workers and chaplains are also on the team. Ladybug House will be a home away from home, a place where the entire family can come, stay, and receive support.
Aren’t these services covered by CHIP or Medicare?
Right now there are only two palliative care homes for children, adolescents and young adults in the United States. As this has never been done in Washington, this is still in the works. Our plan is to have support from insurance and the rest from community giving and philanthropy.
How much progress have you made since you started this effort three years ago?
We have made great strides. We've garnered over 1.3 million dollars in in-kind professional support work, we have an office (thanks to HainLine Construction) in downtown Seattle, and we are moving to make legislative changes with regard to pediatric palliative care. It is our goal to find land in 2017 and break ground once $12 million of the overall capital campaign goal of $20 million is raised. We intend to raise the money needed prior to building, knowing that we will have ongoing fundraising needs once the home is built.
How close are you to reaching your goal?
We have built a strong foundation. We have partnered with Seattle University, Seattle Pacific University and UW to create a strong, effective business model. We are working to raise the funds to hire staff so we can start a capital campaign in 2017 to raise $20 million. Our goal is to open in 2020, and we want to raise the funds to build and have operating costs for one year in the bank. Ladybug House is in the process of building awareness and support in our community, Dozens of volunteers support the organization’s efforts towards building the home. The organization has one paid administrative assistant.
Ladybug House is continuing to build relationships in the community and is working on fundraising in order to build this much-needed home—a number of key relationships with potential major donors are being forged.
Concurrent with our efforts to raise funds for building the facility, we have established a community outreach program that we call “Ladybug Love,” offering support and resources to families in need of short-term respite care and providing them with some quality of life and memory making opportunities. We have also partnered with the Leukemia and Lymphoma society to bring a much needed speaker series to the community. “Conversations that Matter” will be hosted quarterly, open to the community, medical and professional services.
Do you have land?
Not yet. We are looking for a donation of three to five acres from the city, businesses or a private donation. Members of our Land Committee are working to find a suitable building site for
In what ways would the Ladybug House benefit terminally ill children and their families?
Ladybug House will be the first in Washington, and only the third home in the United States, to offer age-appropriate support to children and their families during the most difficult time in their lives. Ladybug House will offer community, caring, respect, dignity, and support. The home will be available to support families who are caring for their children with life limiting illnesses giving them a place for rest and time to be together and if needed an option for end of life support outside of the hospital. Specific admission and enrollment criteria as well as the referral process will be determined and defined by the Clinical Advisory Committee.
What would be the average length of stay?
We will anticipate that depending on the child’s condition. The model in Canada and the UK provides the family with a passport allowing 21 to 30 days a year, to be reserved as needed. LBH will always keep two rooms open for emergency end-of-life support. It is our goal that there would be no out of pocket charges for the families.
Would Ladybug House be funded strictly through donations?
Our funding will come from insurance, fundraising, philanthropy, grants/foundations, and community giving.
In what ways can I help?
Reach out. Go to our website (http://www.ladybughouse.org) and set up a meeting with us. We would love to share our needs, host a fundraiser, see our website for ideas, have one of our volunteers come speak with your family, friends, employees, become a volunteer, donations are always appreciated (e.g. land, cash or services). Head to our donate page for more information. Your donation is tax deductible to the fullest extent allowed by the law. Your donation will help make Ladybug House a reality. For more information please send us a note via our contact page.
What is the age bracket and the criteria of illness to qualify?
During the initial phase we will be looking at 19 years of age and under, but will look at young adults on a need to need basis. Seattle Children's Hospital treats to age 29. This will further be decided with the support of the community.
What services will be available for the children and their families?
Ladybug House recognizes that when a family hears the terrible news that their child has a life threatening or life limiting illness, it’s not just the sick child that’s affected, it may feel like their whole world is falling apart. LBH will provide a range of support from time of diagnosis through treatment and beyond for the entire family including siblings and grandparents. Addressing the physical, emotional, psychological and spiritual needs of each individual.