We hope these resources are helpful to caregivers of children who have complex medical conditions. They are specifically for parents, members of the medical community, and providers of integrative care services. The majority of the services mentioned are for families living in or close to Washington, DC. As Eliana's Light grows, we will add information relevant to families living in other locations.
Click here to download a contact sheet of local family-friendly pharmacies that are familiar with medications for children with complex medical conditions.
Local Government Early Childhood Development Programs
The Federal Government and local governments provide free services that can help your child achieve her/his developmental goals.
For DC Families: The DC Government recently launched Thrive By Five, a "one stop resource center to help District Parents and Caretakers navigate the city's wide range of early health and learning resources. We recommend you start there to find resources that may be helpful to you.
Thrive By Five's website contains links to other relevant websites, such as: DC's Strong Start Early Intervention Program (which has a directory of additional resources on its site), DC's Strong Start Early Stages Program, the DC Social Emotional Early Development Project (SEED), and much more.
The following may also be helpful to you from the DC Government:
* Access HelpLine (1(888)7WE-HELP or 1-888-793-4357): Professionals can activate mobile crisis teams to respond to adults and children who are experiencing a psychiatric or emotional crisis and are unable or unwilling to travel to receive behavioral health services.
* Department of Behavioral Health Child/Youth Ombudsman Program: To assist parents, guardians and youth with any challenges related to behavioral health needs for children/youth (up to 25 year old).
* Network of Care for Behavioral Health: an online resource directory of mental health and substance use services and resources.
* Office of Disability Rights: provides a wide range of information and services for DC residents with disabilities.
* Parent Resource at the Office of the State Superintendent of Education: Adrienne Rodriguez – 202-478-5947; Sheryl Hamilton (Supervisor) – 202-741-6404 (Office)
For MD Families:
- Maryland's Infants & Toddlers Program: providing early intervention services for young children with developmental delays and disabilities— and their families.
- HealthCare Access Maryland: connecting residents to insurance and care, educating the community about healthier living, and advocating a more equitable health care system.
- Office of Special Education Services: providing services for students with disabilities from birth through 21.
- Disability Rights Maryland: advancing the legal rights of people with disabilities.
- Rare & Expensive Case Management Program (REM) of MD: a case managed fee for service alternative to HealthChoice Managed Care Organization (MCO) participation for recipients with specified rare and expensive conditions.
- Children with Special Health Care Needs Resource and Referral Services: to help children with special healthcare needs (CSHCNS) families and providers to find resources in Maryland’s communities and Children's National Health System and to refer them to those services.
For VA Families:
- Care Connection for Children: statewide network of centers of excellent for children and youth with special health care needs (CYSHCN) that provide leadership in the enhancement of specialty medical services; care coordination; medical insurance benefits evaluation and coordination; management of the CYSHCN Pool of Funds; information and referral to CYSHCN resources; family-to-family support; and training and consultation with community providers on CYSHCN issues.
- Center for Family Involvement (VA): To work with families to increase their skills as advocates, mentors and leaders so that families, children and young adults with disabilities can lead the lives they want.
- disABILITY Law Center of VA: protecting and advocating for people with disabilities in Virginia
- DC Candlelighters: To provide emotional, educational, practical and financial support to families of children fighting cancer in the Northern Virginia area. www.dccandlelighters.org
- Care Connection for Children: To provide a VA state-wide network of centers of excellent for children and youth with special health care needs (CYSHCN) that provide leadership in the enhancement of specialty medical services; care coordination; medical insurance benefits evaluation and coordination; management of the CYSHCN Pool of Funds; information and referral to CYSHCN resources; family-to-family support; and training and consultation with community providers on CYSHCN issues. http://www.vdh.virginia.gov/care-connection-for-children/
Eliana's Light Constellation Kits
Eliana's Light develops and delivers a tailored Light Constellation Kit for each family whose application for support is approved. This Light Constellation Kit will be developed based upon the family's interests and needs; and include complementary care ingredients such as relevant gift certificates, tips on how to mediate, a yoga mat, and a healthy meal. We will only include safe and appropriate relaxation "tools" that caregivers and their kids will use. Some of these kits have a specific theme (e.g. "Feeding Therapy Light Constellation Kit") and include items relevant to that theme (e.g. items that create a calming environment for when the child has feeding therapy).
Click here to learn more.
Click here to donate a themed or general Eliana's Light Constellation Kit to a family.
Other Organizations and services You May Want to Contact for Different Kinds of Support
- Advocates for Justice and Education, Inc: To empower families, youth, and the community to be effective advocates to ensure that children and youth, particularly those who have special needs, receive access to appropriate education and health services. www.aje-dc.org
- Air Charity Network: To provide access for people in need who are seeking free air transportation to specialized health care facilities or distant destinations due to family, community, or national crisis. www.aircharitynetwork.org
- Alex's Lemonade Stand Foundation: A national childhood cancer foundation dedicated to raising funds for research into new treatments and cures for all children battling cancer. Manages the SuperSibs Comfort and Care Program provides tools to help siblings during and long after this life challenge.
- American Cancer Society: To fund and conduct research, share expert information, support patients, and spread the word about prevention. www.cancer.org
- American Institute for Cancer Research: To research, interpret and share the science on the link between diet, nutrition and cancer. www.aicr.org
- Aunt Bertha: Search through this database to find free or reduced-cost services such as medical care, food, job training, and more. www.auntbertha.com
- A Wider Circle: To help one individual and one family after another to rise out of poverty.
- Believe in Tomorrow Children's Foundation: To provide exceptional hospital and respite housing services to critically ill children and their families. www.believeintomorrow.org
- CancerCare for Kids: To provide free, professional support services including counseling, support groups, educational workshops, publications and financial assistance to anyone affected by cancer. www.cancercare.org
- Capitol Hill Center for Individual and Family Therapy: To provide support that integrates cognitive behavioral, gestalt, EMDR, hypnosis, expressive therapies--art, imaging, movement, or play--into the work as appropriate. http://capitolhillcenterfortherapy.net/
- Capitol Hill Consortium for Counseling & Consultation: To provide - through an interdisciplinary group of Psychologists, LPC’s, and Licensed Independent Clinical Social Workers who work collaboratively -- a holistic counseling approach that helps clients address the myriad of challenges in their personal, educational and professional lives.
- Casey Cares Foundation: To provide ongoing and uplifting programming to critically ill children and their families (including siblings!). www.caseycares.org
- Casey Health Institute: To provide exceptional integrative health care through collaboration and innovation. www.caseyhealth.org
- Children's Cardiomyopathy Foundation: To increase awareness, accelerate research, and advance education on pediatric cardiomyopathy. www.childrenscardiomyopathy.org
- Children's Law Center: To be the voice for children who are abused or neglected, who aren’t learning in school, or who have health problems that can’t be solved by medicine alone.
- Children's Organ Transplant Association: To provide fundraising assistance and family support to children and young adults who need a life-saving organ transplant. www.cota.org
- Claire's Place Foundation: To provide heart felt help to children and young adults diagnosed with Cystic Fibrosis, as well as their families, for the purpose of improving their quality of life. They hope to accomplish this by heightening awareness and providing education, skills, financial and emotional support. www.clairesplacefoundation.org
- Easter Seals Serving DC, MD, and VA Easter Seals provides a variety of services that may be helpful to a family with a child who has a complex medical condition. Here are a few examples: http://www.easterseals.com/DCMDVA/our-programs/childrens-services/.
- Erika Kate Hope Alliance: To help ease the emotional, spiritual and financial burdens borne by parents of children with life-threatening heart disease. www.erikakate.org
- Family Voices: To achieve family-centered care for all children and youth with special health care needs and/or disabilities. www.familyvoices.org
- Friends of Patients at the National Institutes of Health: To provide hope by giving emotional and financial support to patients receiving groundbreaking and life-saving treatments at the NIH. www.friendsofnih.org
- Quality Trust for Individuals With Disabilities: To be an independent catalyst for change in the lives of people of all ages with developmental disabilities. We partner with people and their families so they can succeed, thrive and experience full membership in the communities they choose. www.dcqualitytrust.org
- Health Reach: A service of the National Institutes of Health to provide a resource of quality multilingual, multicultural public health information for those working with or providing care to individuals with limited English proficiency. https://healthreach.nlm.nih.gov
- Help Hope Live: To support community-based fundraising for people with unmet medical and related expenses due to cell and organ transplants or catastrophic injuries and illnesses. www.helphopelive.org
- Holistic Moms Network: To connect parents who are interested in holistic health and green living. www.holisticmoms.org
- Hope Connections for Cancer Support: To help people with cancer and their loved ones deal with the emotional and physical impact of cancer through participation in professionally facilitated programs of emotional support, education, wellness and hope.
- Hope for Henry Foundation: Reinventing how hospitals care for seriously ill children and their families through innovative programs that entertain, reduce stress and empower children to be active participants in their own care. www.hopeforhenry.org
- Hope Marietta Foundation: To raise money and awareness for Congenital Heart Defects through community involvement, fundraising events, and service projects directly benefiting local children. www.hopemariettafoundation.com
- Jill's House: To celebrate children with special needs and provide relief to the extraordinary families who love them through short-term, overnight respite care. www.jillshouse.org
- Leukemia & Lymphoma Society: To cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families.
- Lollipop Kids Foundation: To combat social stigmas, ease the financial burden placed on these families, offer emotional support and provide a brief respite so that every child with a disability has access to a hope and a future. They offer programming and an equipment closet to which families can apply for appropriate Durable Medical Equipment.
- Make a Wish Foundation: To grant the wishes of children with life-threatening illnesses. www.makeawish.org
- Mattie Miracle Cancer Foundation: To increase childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families, and medical personnel. www.mattiemiracle.com
- MBA Open Doors Foundation: To give mortgage and rental assistance payment grants to parents and guardians with critically ill or injured children, allowing them to take unpaid leave from work and spend precious time together without jeopardizing their cherished homes. https://www.mba.org/who-we-are/the-mba-foundation/apply-for-a-grant
- Mesothelioma.net: To provide free resources and guidance to those diagnosed with asbestos-related cancer.
- Metropolitan Washington Ear: To provide free services for blind, visually impaired, and physically disabled people who cannot effectively read print.
- My Cancer Circle: To provide a free, private support community for caregivers of people facing cancer.
- National Center for Complementary and Integrative Health (of the National Institutes of Health): To define, through rigorous scientific investigation, the usefulness and safety of complementary and integrative health interventions and their roles in improving health and health care.
- National Center for Learning Disabilities: to improve the lives of the 1 in 5 children and adults nationwide with learning and attention issues—by empowering parents and young adults, transforming schools and advocating for equal rights and opportunities. www.ncld.org
- National Organization for Rare Disorders: To serve as a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. They have many resources for families you can access here.
- Parent Navigator Program at Children's National Medical Center: To reduce family stress by connecting parents or caregivers to resources, assisting with navigating care, finding educational tools for parents and children, and providing emotional support so that managing a child’s healthcare journey is a little easier.
- Preemies Today: To advocate for the needs of families experiencing a premature birth. www.preemiestoday.org
- Songs of Love: To provide personalized uplifting songs, free of charge, for children and teens currently facing tough medical, physical or emotional challenges. www.songsoflove.org
- Springboard Beyond Cancer: This joint venture between the National Cancer Institute and the American Cancer Society provides many resources related to wellness and mindfulness, among other topics, to help those affected by cancer. https://survivorship.cancer.gov/springboard/stress-mood/practice-mindfulness
- The Ulman Cancer Fund for Young Adults: To change lives by creating a community of support for young adults, and their loved ones, impacted by cancer. www.ulmanfund.org
- The Wholehearted Foundation: To provide short-term spiritual, financial, relationship, and program awareness support that makes a long-term impact for “heart families” whose child(ren) receive cardiac care at Children’s National Medical Center in Washington, DC. www.wholeheartedfoundation.org
- Total Family Care Coalition: To find solutions to help Washington, DC families, youth and individuals -- whether it's with their trained peer support workers, teachers or staff. http://www.totalfamilycarecoalition.org
- Washington Regional Transplant Community: To respond to every potential organ, tissue and eye donation. www.beadonor.org
Organizations & resources re: caregiving for caregivers
- Caregiver Action Network: To improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. Manages a Family Caregiver Toolkit, communities, and other resources. www.caregiveraction.org
- Caregiver Guide For Those Caring For Others With Mesothelioma. While this guide was specifically designed for those caring for others who have been diagnosed with malignant mesothelioma, the tips are broadly applicable.
- Drug and Alcohol Treatment Resources for Caregivers. The Recovery Village offers many resources for caregivers, including a hotline 888-506-8919.
- Family Care Navigator: To provide a searchable (by zipcode) database of resources for caregivers. Developed by the Family Caregiver Alliance. DC: https://www.caregiver.org/state-list-views?field_state_tid=156; MD: https://www.caregiver.org/state-list-views?field_state_tid=79; VA: https://www.caregiver.org/state-list-views?field_state_tid=105
- Family Caregiver Alliance: To improve the quality of life for caregivers and those they care for through information, services, and advocacy. www.caregiver.org
- Kadamba Tree Foundation: To support family caregivers in finding effective ways to thrive through life’s challenges.
- Rosalynn Carter Institute for Caregiving: To support caregivers – both family and professional – through efforts of advocacy, education, research, and service. They offer a list of resources you can access by clicking here.
- Tools, tips, guidance from VA Caregiver Support that are relevant to caregivers of children with complex medical conditions: https://www.caregiver.va.gov/pdfs/NationalFamilyCaregiverMonth_Introduction.pdf
"Conversations with a caregiver"
Eliana's Light's Online Learning Series for Caregivers of Children With Complex Medical Conditions. Join us on this journey of learning and exploration. This learning series will address topics related to integrative care services specifically for children with complex medical conditions and also their caregivers. Please email us to let us know topics you'd like to learn more about via an interview with a specialist: email@example.com.
1. "6 Stress Relief Techniques for Caregivers of Children With Complex Medical Conditions". A conversation with Dr. Anne Berkeley, a licensed and board certified naturopathic physician who specializes in holistic and natural medicine. Dr. Berkeley runs a private practice in Washington, DC called Medicine To Thrive.
2. "Meet Christina Spencer, Mom Of A Child With A Complex Medical Condition". This "Conversation With A Caregiver" shares some of the reality families experience when one of their children has a complex medical condition. Christina's son, Memphis, has been in the Cardiac Intensive Care Unit (CICU) for all 8 months of his life. The Spencers have a 2 year-old daughter as well, and are trying to balance their children's needs as well as their own.
Research you can read to access evidence
- Click here to download a list of recent research on various complementary care modalities used with children.
- Click here to access research the National Institutes of Health (NIH) have compiled on the scientific evidence behind various complementary health care approaches.
- Click here to access research and resources from NIH's National Center for Complementary & Integrative Health's "Know The Science" initiative, which aims to help you make well-informed decisions on your health.
- Click here to view a list of hyperlinked resources The Whole Child Center compiled on Integrative Medicine and many related topics.
- Click here to view a list of hyperlinked resources Least Invasive First compiled on Integrative Medicine and many related topics.
- Click here to access a compiled list of research on Mindfulness-Based Stress Reduction from the Palouse Mindfulness Program.
- Click here to view examples of Integrative Medicine programs in operation at hospitals in the U.S.
Tools parents can use when taking their child to, or while their child is in, the hospital
- Children's National Medical Center's tools:
- CaringBridge: You can create a personalized website to update your loved ones on how your child is doing in the hospital, without having to repeat the same story multiple times.
- Least Invasive First: Carry and access your important health directives and documents everywhere, digitally.
- DocJournal App: DocJournal was designed by patients and doctors to simplify tracking your health information, and to empower you for wellness and advocacy.
- Social Stories: A social story is a tool that a parent can use to prepare her/his child for an upcoming event that is new, unfamiliar, unexpected and/or undesirable (e.g. going to the hospital for a scary procedure). While there are many examples you can find via Google, click here to access a template Rady Children's Hospital in San Diego created that you can use.
Information You Can Use
Medical Stress & Trauma
- The National Child Traumatic Stress Network's PowerPoint Presentation on "Medical Events & Traumatic Stress in Children & Families"
- The National Child Traumatic Stress Network's "Pediatric Medical Traumatic Stress Toolkit for Health Care Providers" (toolkit for parents as well)
- The National Institute of Mental Health's research on Post-Traumatic Stress Disorder.
- A YouTube video on Somatic Experiencing in the Prevention of Early Childhood Medical Trauma.
- Information on Adverse Childhood Experiences (ACE's), of which medical trauma is one:
- Substance Abuse and Mental Health Administration: Quotes/Excerpts related to children with complex medical conditions who often have traumatic medical experiences that cause chronic and toxic stress: "Adverse childhood experiences (ACEs) are stressful or traumatic events...Many studies have examined the relationship between ACEs and a variety of known risk factors for disease, disability, and early mortality...Research has demonstrated a strong relationship between ACEs, substance use disorders, and behavioral problems. When children are exposed to chronic stressful events, their neurodevelopment can be disrupted. " Eliana's Light promotes and advocates for screening of ACEs for children with complex medical conditions, especially those who likely have ACEs in the home.
- The Early Childhood Innovation Network's (ECIN) work on ACEs. ECIN is a local collaborative of health and education providers, community-based organizations, researchers, and advocates promoting resilience in families and children from pregnancy through age 5 in Washington, DC.
- Dr. Nadine Burke-Harris' Ted Talk on ACEs. Dr. Burke-Harris is a pediatrician who started the Center for Youth Wellness to address ACEs, and has conducted significant research in this area. Her recent book, The Deepest Well, is quickly becoming a best-seller.
- Children's Environmental Health Network's Eco-Healthy Child Care Fact Sheets
- Environmental Working Group's 2013 Guide to Dirty Dozen Endocrine Disruptors
- Environmental Working Group's 2014 Guide to Avoiding GMO Food
- Environmental Working Group's 2014 Guide to Seafood (find healthy options)
- Environmental Working Group's 2016 Guide to Healthy Cleaning (Safety ratings for more than 2,500 products)
- Environmental Working Group's 2016 Guide to Sunscreens
- Environmental Working Group's 2016 Guide to Pesticide in Produce: The Dirty 12 and the Clean 12 (Which Ones to Buy Organic)
- Healthy Child's "Easy Steps" library is a "collection of their tried and true recommendations to make your home (and world) a cleaner, greener, safer place to raise your child. From individual steps to e-books and more, they have all the tools you need to understand the issues and easily take action".
- National Resources Defense Council's "Four Ways to Avoid Toxic Chemicals in Food Packaging" (2015)
- National Resources Defense Council's "The Smart Seafood Buying Guide" (2015)
- "8 Natural Ways to Detox Your Body": Integrative Health Blog by National Integrated Health Associates
- Environmental Working Group's Guide to Children's Cereals (Sugar by the pound)
- Environmental Working Group's Guide to Good Food on a Budget
- "Healthy Eating for Life" by Physicians Committee for Responsible Medicine
- "Holistic Nutrition: How to Stop Sugar Cravings in 3 Must-Do Steps" by National Integrated Health Associates
- "Nutrition for Kids" by Physicians Committee for Responsible Medicine
- "Nutrition Rainbow of Cancer-Fighting and Immune-Boosting Foods" by Physicians Committee for Responsible Medicine
websites, Apps, CDs, Videos, shows, books, and Services You Might Find Useful
- Essential Oils:
- Healing Touch:
- Healing Touch training program: This website provides an overview of Healing Touch, an energetic therapy modality; and explains how it is used in various medical facilities, how you can get trained (and gain nursing credits), and how you can find a Healing Touch accredited professional near you.
- YouTube video on Healing Touch by Sue Kagel, RN, BSN, CHTP/I, HNC.
- Mental Health:
- Natural Mental Health: This new website offers trusted information and holistic supplements and products to help individuals of all ages optimize their mental health and build resilience in mind, body, and heart. The founders of this initiative, Drs. Henry Emmons and Tim Culbert, are integrative health pioneers. www.naturalmentalhealth.com
- Mindfulness and Meditation:
- Practical tips on how to achieve greater peace of mind: www.getpom.org
- Headspace: A website and an app that make meditation simple.
- List of mindfulness-related apps: www.mindful.org/free-mindfulness-apps-worthy-of-your-attention
- Mindfulness app for children: www.mindful-app.com
- Still Quiet Place's meditation CD's for children and adults: www.stillquietplace.com
- Mindful magazine.
- Self-Compassion and Self-Care:
- Self-compassion tools and guided meditations: http://self-compassion.org/category/exercises/#guided-meditations
- YouTube video on Marian McEvilly of Children's National using aromatherapy, the Emotional Freedom Technique (EFT), and other complementary care techniques to support patients at Children's National Medical Center.
- The Relaxation Response from Dr. Herbert Benson, Harvard Medical School and Founder of the Benson-Henry Institute for Mind-Body Medicine: www.relaxationresponse.org
- "Mr. Tumble/Something Special" show for kids with special needs on YouTube.
- I Get It: Educational applications for children with additional learning needs. They include social stories and photo book templates, including one on going to the hospital.
- Headspace: A website and an app that make meditation simple.
- List of mindfulness-related apps: www.mindful.org/free-mindfulness-apps-worthy-of-your-attention
- Mindfulness app for children: www.mindful-app.com
- Healing Children. (2017) By Newman, Kurt MD.
- Child Decoded: Unlocking Complex Issues in Your Child's Learning, Behavior or Attention. (2017) By Marijke Jones, Robin E. McEvoy PhD, and Kim Gangwish.
- The Holistic Pediatrician, Twentieth Anniversary Revised Edition: A Pediatrician's Comprehensive Guide To Safe and Effective Therapies For the 25 Most Common Ailments Of Infants, Children, and Adolescents. (2016) By Kathi Kemper, M.D., M.P.H.
- Whole Person Care. (2011) By Hutchinson, Tom.
- A Still Quiet Place for Teens: A Mindfulness Workbook to Ease Stress and Difficult Emotions (2016) By Saltzman, Amy.
- The Stress Reduction Workbook for Teens: Mindfulness Skills to Help You Deal With Stress. (2017) By Biegal, Gina.
- The Anxiety Workbook for Teens. (2008) By Schab, Lisa.
- Wherever You Go, There You Are: Mindfulness Meditation in Daily Life (2005) by Kabat-Zinn.
- Read these children's books if you feel they may be helpful for your child/ren: It's Ok To Be Different, Ian's Walk, My Friend Isabelle, El Deafo, Maxi's Super Ears, Uniquely Me, Uniquely Brave, The Black Book of Colors, and Be The Boss of Your Pain.
- Read through the list of books that Duke Integrative Medicine compiled, which pertain to mindfulness, yoga, and meditation, among other topics.
- Healing Touch Training: www.healingtouchprogram.com
- Infant Massage USA: https://infantmassageusa.org/
- Mindfulness-Based Stress Reduction *Free* Online Training Course: www.palousemindfulness.com
- Music for Healing and Transition Program: www.mhtp.org
- Potomac Massage Training Institute: www.pmti.org
- Yoga and Meditation Teacher Training: www.themindfulnesscenter.org
Associations and References
- Academic Consortium for Integrative Medicine and Health
- The American Board of Integrative Medicine
- National Center for Complementary and Integrative Health of the National Institutes of Health
- Natural Medicine Comprehensive Database
- Consumer Lab