What Is a Patient-Centered Medical Home?

Why should you care?

Many hospitals try to create an environment they call “Family-Centered Care” which is more a derivative of Patient-Centered Medical Home, a concept first introduced by the American Academy of Pediatrics (AAP) in 1967. At that time, it was envisioned as a central source for all the medical information about a child. It laid the groundwork for AAP’s policy statement in 1992 that defined a medical home as delivering family-centered, comprehensive, continuous and coordinated care that all infants and children deserve.  Technology helped meet the original definition of providing a central source for all medical information.

Through the years, organizations have been established, such as the Patient-Centered Medical Home (PCMH), to provide accreditation of what is now seen as the four-core functions of PCMH: accessible, comprehensive, longitudinal and coordinated care in the context of families and community. During the development of national healthcare act, Obama hoped the national healthcare act would embrace Family-Centered Medical Care saying he would “encourage and provide appropriate payment for providers who implement the model.”  As we all know that never happened.

The challenges involved in facilitating the delivery of family-centered care increases as the complexity of patient needs increase.  In addition, the patient’s preferences and their ability to organize their own care play a significant role. Increases in complexity may overwhelm informal coordinating functions requiring a care team that can explicitly provide coordinated care and assume responsibility for the coordination of a particular patient’s care, according to PubMed Central an archived text at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM). Why is this important to you? Because Here to Serve is the missing link!

While technology has helped organize and coordinate medical records, and in some cases medical care, what remains as challenges include: accessibility, comprehensive care, and “coordinated care in the context of families and community”; the last one is a BIG one!

Here to Serve is uniquely positioned to help families with what hospitals call “Family-Centered Care,” which is the fourth core function of PCMA, “coordinated care in the context of families and community.”  We are excited about how we have been able to serve families with family-centered care with the help of a community of supporters. At the same time, we are acutely aware we are not widely used due to numerous factors, but these three are the biggest:

1. Hospital social workers, who must juggle conflicting priorities including a heavy case load of low-income/poverty-level patients who require government assistance programs, are not focused on helping private insurance patient families.
2. With social workers NOT focused on patients who have private insurance, referrals are not being made to patient families who could use Here to Serve services.
3. Inexperience of patient families who have a child diagnosed with cancer causes them to overlook resources. What results is the complexity of home care overwhelms informal coordinating functions of patient families becomes apparent well into the journey. They start the journey thinking they can rely only on friends and family, or themselves, many of whom have never navigated this journey and do not know what lies ahead.

Here are some concerning statistics if patient families choose to do this alone:

• According to the Department of Health and Human Services, during any given year:
  • 59% of informal care­givers have jobs in addition to caring for another person. Because of time spent caregiving, more than half of employed women caregivers show
    • are more likely to be have symptoms of depression or anxiety
    • are more likely to have a long-term medical problem, such as heart dis­ease, cancer, diabetes, or arthritis
    • have higher levels of stress hor­mones
    • spend more days sick with an infec­tious disease
    • have a weaker immune response to the influenza, or flu, vaccine
    • have slower wound healing
    • have higher levels of obesity
    • may be at higher risk for mental decline, including problems with memory and paying attention
    • have a 63% higher risk of mortality than others, even when adjusted for chronic disease and other risk factors.

If you know someone who has a child recently diagnosed with cancer, help them understand this is a complex journey and even national health organizations, healthcare professionals, hospitals, and the government have not figured it out.  Don’t let them make this journey without the help of Here to Serve to assist their friends, family and the community at large to bring family-centered help to their homelife. Use the GET HELP button to request our services!

Volunteer Highlight – Maureen Girouard

We have benefited from so many volunteers, it is hard to pick just one to highlight.

Maureen Girouard came to Here to Serve in 2018 after spending her previous 14 years at Children’s Hospital Los Angeles, where she was employed as a consummate fundraiser for the duration of its record-setting $1 Billion Living Proof Campaign. The Living Proof campaign raised more than any other free-standing, full-service pediatric hospital at the time of its completion in 2011.

Prior to that she gained further non-profit experience while at the American Heart Association where she oversaw operations for the four Los Angeles county fundraising offices.  Her knowledge of fundraising and sharing our story was simply invaluable.  Maureen shared, “one of the most important lessons I’ve learned about fundraising and philanthropy is if you can’t speak from personal experience by having authentic passion for your organization’s mission, you’re most likely not going to be successful.”

Maureen came to us by participating in one or our care communities helping another family. She was acutely aware it takes a village to do what we do. She genuinely felt Here to Serve had to be supported as an organization so we can help more families.  As Here to Serve wrestled with how to engage our care community members to support our organization, Maureen helped develop “Our Story” for support.  She became a vital link to our fundraising efforts and in the short time she volunteered with us, her many contributions had incredible impact.  Maureen has since taken a position as Development Director at Professional Child Development Associates (PCDA) in Pasadena. We miss her but wish her well. PCDA is incredibly lucky and blessed to have her!

 

Our Resource Database: A VITAL Service to Our Families!

Your help supports many facets of Here to Serve as an organization. Did you know that hospital social workers generally have no database of resources for families who are NOT on government assistance?  Most social workers are focused on government programs and helping only those who qualify for them. They may provide a couple of foundations to families on private insurance to help with finances, but little more.  But what happens if you need adaptive appliances, an accountant, respite help, a patient advocate, community fundraising assistance, a vacation for the family, camp for both your sick child and their other siblings, help with household bills, transportation and lodging for clinical trials, integrative and alternative medical support? The list goes on…

Here to Serve provides these resources and, more than that, we don’t just hand our families these resources, we engage with them to obtain what is needed where we are able.  As you might imagine this is A LOT of work and we could really use some volunteer help keeping our database up to date.  If you or anyone you know has time to do research on the Internet as well as make calls to update our database that would be a tremendous help. We would also like to put our resource database into ‘the cloud’, and in a easily-usable format; but, that requires the help of a resource database tech expert. We try to keep our expenditures devoted as much as possible to helping families. Hiring people with this skill would limit what we can do for our families. So, if you or anyone you know can help us improve this database structure, please contact us right away at [email protected].

Zein Youssef – Your Donations DO Make a Difference!

Childhood cancer boldly and without warning enters the lives of our sons and daughters without reason or cause. Zein has bravely been battling cancer since he was 6 years old and has experienced 4 relapses; his last being a secondary cancer resulting from previous chemo treatments.  He has endured over 55 sessions of chemotherapy, 600 chemo pills, 50 sessions of radiation, 3 clinical trials and 45 trips to the operating room! During treatments he often loses the ability to sleep, attend school, think, play or function and experiences extreme pain. He deals with paralysis in parts of his body and still maintains his infectious smile while adjusting his life to what he can do.

A few years ago, Zein trained in Tai Kwon Do, obtaining his first-degree black belt.  He no longer is able to do Tai Kwon Do due to increased paralysis from treatments and surgery.  Focusing on what he can do, his Dad suggested golf as a family activity they all can do, including Zein.  But Zein had no golf clubs and finances were such that this was not an expense that could not be absorbed on top the family’s living and medical expenses.  In early March, because of the generosity of our donors, and Here to Serve being a 501 (c) (3) nonprofit, we negotiated with U.S. Kids Golf who generously reduced the cost so golf clubs could be purchased not only for Zein but for his sister Malak! Often, we forget that siblings are also impacted and give up a lot too!  You may wonder what the value of supporting Here to Serve is? Our Here to Serve care community members see that they are providing meals and other daily needs for our families.  However, organizing those efforts and keeping people involved and engaged over the long journey takes time, effort and skill; in some cases, as long as 6 or more years. There are many unseen ways in which Here to Serve steps up to help families.

Because of your support and donations to Here to Serve as an organization, (beyond the funds we help raise for the families we serve), we have organized product and service donations to our families from other businesses and the community including: cars, rehabilitative devices and bikes, burial and cremation expenses, counseling, as well as provide resources in the way of CPA’s, home repair, short-term housing, packing and moving, special birthday party venues and surprises, gifts for the holidays, Thanksgiving meals, patient advocates, attorneys, travel agents, respite trips, tickets to venues and amusement parks, and so much more.  Your donations to Here to Serve COUNT for A LOT! Please be as generous as you can so we can continue blessing the families we serve.

Please DONATE now!