Additional Resources

Recommended Reading for Parents and Caretakers

  • “A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children” by Jolene Philo – a book to remind parents of the importance of maintaining hope despite the cards we are dealt.
  • “Sometimes” and “Just Because” by Rebecca Elliott – children’s stories about growing up with a sibling who has special needs.

Recommended Websites and Social Networks for Parents and Caregivers

  • A Very Special Family — the McNulty family, featured in this publication, has a website and Facebook page dedicated to their family’s story.
  • American Lung Association — connects families with resources and is the leading organization working to save lives by improving lung health and preventing lung disease, through research, education and advocacy.
  • Cerebral Palsy Parents Information Group — a Facebook group that the Maloney family belongs to.
  • Department of Education’s Early Intervention Program CONNECT Helpline — provides support and services to families with children, from birth to age 5, with developmental delays and disabilities. Call 800-692-7288 or
  • Epilepsy Foundation — offers a range of free services and programs, including respite care, for those who are affected by epilepsy and their caregivers. (Eastern PA) or (Western/Central PA)
  • Family Voices — a national, family-led organization of families and friends of children and youth with special health care needs and disabilities.
  • Hope Grows — empowers caregivers to find wellness of mind, body and spirit through counseling, support and short breaks.
  • Muscular Dystrophy Association — provides resources and information to free families from the life-threatening effects of this disease.
  • PA Able — gives individuals with qualified disabilities and their families a tax-free way to save for disability-related expenses, while maintaining government benefits.
  • PA Autism — serves as the state’s leading source of autism-related resources and information.
  • Parent to Parent of Pennsylvania — links families of children and adults with disabilities or special needs.
  • Pediatric Palliative Care Coalition — a volunteer group of professionals, parents and community members, providing information and resources to families with children with lifelimiting conditions.
  • Pennsylvania Health Law Project — offers free legal advice and help to families who need pediatric shift nursing services. Call 1-800-274-3258 or visit
  • Pennsylvania Homecare Association — advocacy group for home health providers, patients and families. Provider directory available online at
  • Pennsylvania Medical Home Initiative — DOH-funded network of primary care practices supporting children with medical complexities.
  • The Arc of Pennsylvania — promotes the human rights of people with intellectual and developmental disabilities, and actively supports their full inclusion and participation in the community throughout their lifetimes.
  • Technology Assisted Children’s Home Program (Children’s Hospital of Pittsburgh) — supports families caring for a child at home who has technology-assisted needs.
  • Technology Dependence Center (Children’s Hospital of Philadelphia) — assists children with chronic lung disease who use assistive therapies such as oxygen.
  • United Cerebral Palsy — provides services and supports, including online guides for parents and youth, to more than 176,000 children and adults every day.
  • Variety: The Children’s Charity — provides children with disabilities unique programs, experiences and equipment throughout 56 counties in Pennsylvania and West Virginia.