One of the hardest things about moving to a new place with a child with special needs is trying to find the resources and support you need. Most of the resources are not found in one place. From my own experience, connecting with other parents who “have been there and done that” has been most helpful. Here is a list of my top ten resources:
- Austim Society of North Carolina Having a young son with autism ASNC has been a great resource. They have a yearly huge conference where they bring top notch speakers. The have local chapters throughout the state for more community/local support. They have an excellent bookstore. They hire parent advocates who are very knowledgeable.
- ECAC (Exceptional Children’s Assistance Center) I used to work closely with them so I am a little biased but even before I worked with them, attending one of their workshops was one of the best educational resources in helping me become my son’s best advocate. Every state is mandated to have a parent education center.
- Wrightslaw Special Education Law and Advocacy One of the best workshops on the IDEA & advocacy educational resources out there.
- First in Families of NC They are the non profit that I tithe to and yes I used to work for them. They do community based grassroots support across the state of NC. They are consumer & family driven.
- Family Support Network of NC They have a huge central directory of resources and they can hook you up with similar parent who have children with similar diagnosis.
- Disability Rights Center of NC Finally outside of state government where there were clearly conflicts of interests. They have the mission to ensure the rights of all NC citizens with disabilities through individual advocacy and system change.
- North Carolina Council on Developmental Disabilities Their mission is to ensure that people with developmental disabilities and their families participate in the design of and have access to culturally competent services and supports, as well as other assistance and opportunities, which promote inclusive communities.
- The Arc of NC They provide advocacy and services to people with intellectual and developmental disabilities. The Arc believes that all people with intellectual and developmental disabilities have strengths, abilities and inherent value; are equal before the law; and must be treated with dignity and respect.
- Easter Seals UCP North Carolina Their mission is to advance the independence, productivity and full citizenship of people with disabilities through an affiliate network. They strive to ensure the inclusion of persons with disabilities in every facet of society — from the Web to the workplace, from the classroom to the community.
- TASH They stand for Equity, Opportunity and Inclusion for People with Disabilities. I have attended their nation conferences and been blown away by what I have experience and learned there. I would recommend it to any parent of a child with significant disabilities.
More Disability Community Resources:
Alliance of Disability Advocates
Promotes independence and consumer control by people with disabilities and to advance civil rights of equal access and full participation in society.
ALS Jim “Catfish” Hunter Chapter
Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
A nonprofit organization based in Raleigh, NC, Art Access of Raleigh makes the Arts accessible to people with disabilities throughout the Triangle area of North Carolina. Specifically, they provide audio description for theatre patrons who are blind or have low vision, refer arts administrators to sign language interpreters, and provide accessibility training to arts organizations and arts accessibility information to the public.
The North Carolina Assistive Technology Program (NCATP) is a state and federally funded program that provides assistive technology services statewide to people of all ages and abilities. These devices are designed to assist with everyday functions including mobility, learning, speech, hearing, vision and many others. NCATP allows people to demo these devices at their AT Centers. The centers have training seminars, demo and loan programs, and a trading post where people can exchange devices.
833-9634 or 800.377.1464
The BIANC develops, supports, and/or administers programs, services, and activities that make a difference in the lives of men, women, and children and military and veterans who have been affected by the trauma of brain injury. Sadler has been an ongoing supporter of their annual walk-a-thon.
The Special Olympics organization provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community.
C.A.R.E. (Council of Ageless Residential Environments) As part of the Wake County Home Builders Association this council is a primary resource for ageless design in home construction for HBA members, building industry professionals and the general public.
The CUD is a national organization that provides information and technical assistance on universal design in housing, commercial and public facilities, outdoor environments, and products. It is in our back yard at NCSU!
CHART (Chapel Hill Area Resources and Tools)
CHART’s purpose is to connect families with the people, tools, and services that will help them to support their loved one with autism or a sensory processing disorder. They have a wealth of information and resources.
Estate Planning & special needs trusts Jeff
Jeffrey G. Marsocci is a life and estate planning attorney who has been helping couples, families and individuals with planning matters for more than a decade. He has worked on hundreds of cases to plan for the future while successfully avoiding hidden tax traps, unnecessary legal expenses, and burdensome red tape caused by the probate process.
This is quite a special organization, whose sole mission is to provide opportunities to all children with special needs to play baseball regardless of their abilities. They have constructed special facilities that meet the unique needs of players and their families. My son has played on their teams before and the support is incredible. If you have a child with special needs, or would like to participate in one of their game events, feel free to reach out. They can always use volunteers.
The Carolinas Chapter serves nearly 17,000 people living with MS and their families in 97 counties of North Carolina and all of South Carolina. There are three driving goals behind this change:
To offer more education, support, advocacy and services for people affected by MS
To raise more money and increase our commitment to MS research
To improve operating efficiencies so we can spend more time providing the superior programs, services and fundraising events that you have come to expect from us
The UnitedHealthCare Children’s foundation has grants of up to $5,000 will be awarded to parents and legal guardians of disabled children for health care services and medical equipment inadequately covered by insurance.
Project Healing Waters
Dedicated to the physical and emotional rehabilitation of disabled active military service personnel and veterans through fly fishing and fly tying education and outings.
Gold Coalition is a public/private organization focused on Wake County Aging issues, including housing. One of their most important outreach missions includes arranging for home improvements and repairs for seniors in need on an as-needed basis. Volunteer programs can also assist with painting and other minor repairs. For more major repairs, loan and grant programs are available through the City of Raleigh, Wake County, and the USDA.
Provides home and community-based services and information in the Wake County area so that they can maximize their choices for independence, comfort, safety, security and well-being. They provide information and support for decision-making, and also direct services such as home care, adult day care, senior centers.
CAPS (Certified Aging in Place Specialist) contractors:
Blue Ribbon™ Residential Construction is a fully-licensed award winning residential contracting company in Raleigh, NC that provides a full-range of remodeling services that can improve your current space — from original designs to complete construction. They are very versed in accessibility & working with seniors
Sadler Construction is the Triangle’s only CAPS certified home builder that is focused exclusively on designing, renovating and constructing barrier-free/accessible homes and remodels. Owned and operated by Lewis Sadler, Lewis believes that we all deserve to live as independently as possible for as long as possible.
Stanton Homes builds exceptional living experiences in the Raleigh/Triangle area. Featuring extras like accessible homes, military programs, green building techniques, and lots of unique features.