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. averyspecialfamily.com
- 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. lung.org
- Cerebral Palsy Parents Information Group — a Facebook group that the Maloney family belongs to. facebook.com/groups/CerebralPalsyInfo
- 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 education.pa.gov
- Epilepsy Foundation — offers a range of free services and programs, including respite care, for those who are affected by epilepsy and their caregivers. efepa.org (Eastern PA) or epilepsy.com/western-central-pennsylvania (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. familyvoices.org
- Hope Grows — empowers caregivers to find wellness of mind, body and spirit through counseling, support and short breaks. hopegrows.net
- Muscular Dystrophy Association — provides resources and information to free families from the life-threatening effects of this disease. mda.org
- PA Able — gives individuals with qualified disabilities and their families a tax-free way to save for disability-related expenses, while maintaining government benefits. paable.gov
- PA Autism — serves as the state’s leading source of autism-related resources and information. paautism.org/
- Parent to Parent of Pennsylvania — links families of children and adults with disabilities or special needs. parenttoparent.org
- Pediatric Palliative Care Coalition — a volunteer group of professionals, parents and community members, providing information and resources to families with children with lifelimiting conditions. ppcc-pa.org
- 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 phlp.org
- Pennsylvania Homecare Association — advocacy group for home health providers, patients and families. Provider directory available online at pahomecare.org
- Pennsylvania Medical Home Initiative — DOH-funded network of primary care practices supporting children with medical complexities. pamedicalhome.org
- 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. thearcpa.org
- Technology Assisted Children’s Home Program (Children’s Hospital of Pittsburgh) — supports families caring for a child at home who has technology-assisted needs. chp.edu
- Technology Dependence Center (Children’s Hospital of Philadelphia) — assists children with chronic lung disease who use assistive therapies such as oxygen. chop.edu
- United Cerebral Palsy — provides services and supports, including online guides for parents and youth, to more than 176,000 children and adults every day. ucp.org
- Variety: The Children’s Charity — provides children with disabilities unique programs, experiences and equipment throughout 56 counties in Pennsylvania and West Virginia. varietypittsburgh.org/
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