Resources

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.

 

Complementary Care Providers and Places in Washington, DC

Click here to download a regularly updated contact sheet of local yoga studios; acupuncture and meditation centers; energy healers; and more.

Family-Friendly Pharmacies

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 MDa 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.

 

Recommendations

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 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.
  • 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
  • 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

"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: info@elianaslight.org. 

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

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

Environmental Hazards

Nutrition

websites, Apps, CDs, Videos, shows, books, and Services You Might Find Useful

Training Opportunities

Associations and References

Please contact us if you recommend we include any other resources! These lists are for information purposes only, as we don't endorse any particular organization or resource.