I was in the dark for so long after I received my child’s diagnosis. There are a lot of resources available for parents of children with disabilities. If you are struggling to find support, some of the following websites might be helpful. I have no affiliation or sponsorships with these organizations but wish to pass on information to other families in need of support. Below are some of the organizations that helped me when I was seeking assistance. I have included the information which describes the services provided.
- Caring. Com
https://www.caring.com/senior-living/assisted-living/assisted-living-for-seniors-with-disabilities – Caring.com is a leading senior care resource for family caregivers seeking information and support as they care for aging parents, spouses, and other loved ones. They have been featured by AARP, The Administration for Community Living, The National Legal Resource Center, and Forbes, as well as referenced by many governmental agencies and organizations across the Internet. Check out their free resources which cover crucial topics such as costs, funding sources, alternative housing solutions, and essential factors to consider when selecting a facility
- Cerebral Palsy Guide
http://www.cerebralpalsyguide.com – an organization that is dedicated to educating families about cerebral palsy. Their team is committed to raising awareness about cerebral palsy. They also aim to provide important information and support for families affected by cerebral palsy.
- Parent to Parent
https://p2pusa,org -a group that matches each parent with a fellow parent who has a child with the same special healthcare need, disability, or mental health concern, allowing each parent or family to have a contact for sharing information, receiving support, and creating new friendships. Parent to Parent USA has local groups in almost every state and is great for families to connect with each other.
- Agency for Persons with Disability
https://apd.myflorida.com -In Florida, the Agency for Persons with Disabilities (APD) is tasked with serving the needs of Floridians with developmental disabilities. Prior to 2004, it existed as the Developmental Disabilities Program. Each state mqhas their own name for these services. APD works with local organizations and private providers to support people who have developmental disabilities and their families in living, learning and working in their communities. APD identifies the service needs of people with developmental disabilities, and those individuals may receive social, medical, behavioral, residential, and/or therapeutic services.
- The M.O.R.G.A.N. Project
https://themorganproject.org -stands for Making Opportunities Reality Granting Assistance Nationwide. This group, established by parents Robert and Kristen Malfara, supports families in their journey of raising a child with special needs, be that child biological, adopted, or within the foster care system. In addition to having a large library of resources and information on their website, the group also assists families with travel expenses for medical treatments and gifts of medical equipment that aren’t covered by insurance, such as wheelchairs. It works to create a group of parents who are supportive of each other in difficult times.
- Federation for Children With Special Needs
https://fcsn.org -is a national organization that provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities. By allowing these families to more fully participate in community life, children with special needs are able to grow to their full potential. The Federation promotes the active and informed participation of parents of children with special needs in shaping and influencing public policies that affect their families. The peer support network the group provides allows for families to meet with those who can relate and understand.
- Council for Exceptional Children
https://cec.sped.org -is the largest international professional organization dedicated to improving the educational success of children with disabilities. By advocating for successful governmental policies, setting standards for professionals in the education industry, and providing professional development seminars, the organization helps teachers, administrators, parents, related students, and other educational support staff to best support and educate the children with special needs with whom they work.
- Best Buddies
https://www.bestbuddies.org -works to end the “social, physical and economic isolation of the 200 million people with intellectual and developmental disabilities” by helping them form meaningful one-to-one friendships with peers. Through these relationships, Best Buddies works to help those with special needs improve their communication skills, secure jobs and develop the necessary skills to live independently.
- Friendship Circle
https://www.friendshipcircle.org – emphasizes the importance of friendship in the special needs community. Friendship Circle, which has locations throughout the country, pairs teen volunteers with a child with special needs in order to form “lasting friendships” and help teens reap the rewards of “selfless giving.” Most programs take place either after school or on Sundays but include a number of sports, activities, social circles, and trips for older kids. Whether you have a child with special needs, you’re looking to support a family who does or you’re a caregiver for children with special needs, these organizations can aid you in your journey to understanding and advocacy.
- Easter Seals
https://www.easterseals.com -America’s largest nonprofit health care organization, Easterseals is committed to the comprehensive health and wellness of the more than 1.5 million people it serves each year and is prepared to respond to the needs of the one in four Americans living with disability today with outcomes-based services for all disabilities throughout the lifespan. Among their services: early intervention, inclusive childcare, medical rehabilitation and autism services for young children and their families; job training and coaching, employment placement and transportation services for adults with disabilities, including veterans; adult day services and employment opportunities for older adults – in addition to a variety of additional services for people of all ages including mental health and recovery programs, assistive technology, camp and recreation, caregiving support including respite – and much more.
- Family Voices
https://familyvoices.org -provides families with the “tools to make informed decisions” about healthcare and education, builds partnerships between families and their service providers and serve as a trusted resource on healthcare. They also help families learn to advocate for improved policies to best serve children with special needs. One of their main goals is to empower young people with disabilities so that they may become self-advocates for various causes that affect those with special needs. n. Among their services: early intervention, inclusive childcare, medical rehabilitation and autism services for young children and their families; job training and coaching, employment placement and transportation services for adults with disabilities, including veterans; adult day services and employment opportunities for older adults – in addition to a variety of additional services for people of all ages including mental health and recovery programs, assistive technology, camp and recreation, caregiving support including respite – and much more.
- Humber Sensory Processing Service
https://sensoryprocessinghub.humber.nhs.uk/downloads -is a specialist service providing support to children who have sensory processing difficulties. This service is for children with a Hull GP. The Sensory Processing Service is hosted by a small team of sensory-trained therapists. The therapists provide advice and formal sensory processing assessments (criteria requirement for formal assessment).
- Vickie Rubin, Author, parent resource page