Special Needs Resources CT
- autismct.com The Center for Children With Special Needs, Glastonbury, CT
- autismconnecticut.org ASRC – Autism Services and Resources Connecticut. Offering education and information on a range of treatments and providers.
- autismspeaks.org Dedicated to funding global biomedical research into the causes, prevention, treatment and cure for autism.
- mchlibrary.info/KnowledgePaths/kp_autism.html offers a selection of current, high-quality resources about ASD identification and intervention which has been compiled by the Maternal and Child Health (MCH) Library at Georgetown University.
- autismsocietyofct.org Information to serve, support and advocate for persons with Autism spectrum disorders, their families and communities.
- ctautism.org CARE Alliance- a Connecticut based non-profit organization dedicated to improving the lives of children diagnosed with autism.
- ct-asrc.org Connecticut Autism Spectrum Resource Center- provides educational advocacy, support, information, and a comprehensive training series for both parents and professionals
- info.med.yale.edu/chldstdy/autism ”Yale Child Study Center”
- ctfeat.org Connecticut Families for Effective Autism Treatment (CT FEAT)
- aspergersyndrome.org – Asperger’s Syndrome Information
- autism-society.org – Autism Society of America
- ectacenter.org/topics/autism/autism.asp Information on Autism Spectrum Disorders
- ConneCT Kids State of Connecticut Special Pages Just for Special Needs Children
- fpg.unc.edu/~eco/index.cfm The Early Childhood Outcomes (ECO) Center provides national leadership in assisting states with the implementation of high-quality outcome systems for early intervention (EI) and early childhood special education (ECSE) programs.
- kidsdevelopment.co.uk/ Good information for parents on child development including “rewarding good behavior” and choosing toys that fit your child’s interests and abilities. Monthly newsletter available.”
- iamyourchild.org I Am Your Child Campaign- information on brain development.
- zerotothree.org Information on child development & resources on issues ranging from breast feeding to safety.
- naeyc.org Promotes the education of young children.
- aspe.hhs.gov/hsp/ccquality-ind02/guide.pdf Health and Human Services website, includes policy on children and youth; has a publication on choosing quality child care.
- ed.gov/parents/landing.jhtml?src=pn US Department of Education website containing information on school readiness, academic success and services for a child with special needs.
- www.chdi.org A partnership between the University of Connecticut and Yale University whose goal is to improve health outcomes for Connecticut’s children. Has information on issues like sleep, nutrition, oral health, safety and common health problems
- www.ctdownsyndrome.org (CDSC) A Connecticut organization devoted to improving the lives of persons with Down syndrome by promoting equity, opportunity, inclusion, and empowerment for individuals and their families in all aspects of life.
- www.ndsccenter.org (NDSC) A national organization that serves as a source of support and empowerment to persons with Down syndrome and their families.
- www.nads.org Founded by parents of children with Down syndrome who felt a need to create a better environment and bring about understanding and acceptance of people with Down syndrome.
- Book: Babies with Down Syndrome: A New Parents Guide Third Edition 2008 Susan Skallerup, Editor (Also available in Spanish) www.Woodbinehouse.com
- Book: A Parents Guide to Down Syndrome: Toward a Brighter Future Siegried Pueschel, 2000 www.amazon.com
Family Advocacy & Supports
- ctfsn.org The CT Family Support Network is a network of families who have children with disabilities.
- ctparenting.com Important information for parents and caregivers.
- cpacinc.org Connecticut Parent Advocacy Center (CPAC)- information, training & support for parents of infants, children & youth with disabilities
- pathct.org PATH (Parents Available to Help) Parent to Parent of Connecticut – support for families
- eifamilyalliance.org (EIFA) A national group of family leaders dedicated to improving outcomes for infants and toddlers with disabilities.
- familyvoices.org Family Voices-a national grassroots network of families & friends speaking on behalf of children with special health care needs
- php.com Parents helping Parents
- our-kids.org Our Kids
- stompproject.org STOMP is the only National Parent Training and Information Center for military families providing support and advice to military parents regardless of the type of medical condition their child has
- usdoj.gov/crt/ada/childq%26a.htm Commonly asked questions abut child care centers and the American’s with Disabilities Act
General Disabilities Information
- dec-sped.org/families Division for Early Childhood- non-profit membership organization for individuals who work with or on behalf of young children, from birth to age eight, and their families
- familyvillage.wisc.edu/index.htmlx The Family Village- a global community of disability related resources
- nichcy.org National Information Center for Children & Youth with Disabilities
- ectacenter.org The Early Childhood Technical Assistance Center helps to improve state early intervention and early childhood special education service systems, increase the implementation of effective practices, and enhance the outcomes of these programs for young children and their families.
- eparent.com Exceptional Parent Magazine’s on-line resource for parents of children with disabilities.
- infoline.org 2-1-1: Connecticut’s information & referral line- provides information on a variety of resources available in CT- including basic needs, respite, support programs, childcare, healthcare, etc. Look for the 2-1-1 navigator to find resources easily.
- ctrespite.org A web-based clearinghouse for respite resources in Connecticut.
- researchtopractice.info/products.php#bottomlines ”Bottomlines” from the O.H. Puckett Institute: 1-2 page summaries for parents and practitioners on practices used with young children with disabilities. Research is reviewed and conclusions are offered to either support the practice or not.
- do2learn.com/aboutus/research.htm Do2Learn is a website for children with disabilities that uses technology and the web to provide special learning resources for individuals with disabilities and the professionals and caregivers who serve them.
Individuals with Disabilities Education Act
- idea.ed.gov Information on the Individuals with Disabilities Education Act 2004
- cec.sped.org The click the Policy & Advocacy menu for information about IDEA
- ectacenter.org The Early Childhood Technical Assistance Center supports the implementation of the early childhood provisions of the Individuals with Disabilities Education Act (IDEA).
- www.ideadata.org Data about the IDEA from all 57 states and territories
Other Specific Disabilities
- afb.org American Foundation for the Blind (AFB), a US nonprofit organization enabling blind or visually impaired people to achieve equality and access.
- ct.gov/besb Bureau of Education Services for the Blind; also provides information on their services for children.
- chadd.org Children and Adults with Attention Deficit Disorder (CHADD)
- chasa.org Offers support and information for families of children who have hemiplegia, hemiparesis and/or pediatric stroke.
- chargesyndrome.org CHARGE Syndrome Foundation is an organization aimed at providing information to parents and providers on this genetic pattern of birth defects.
- familyconnect.org/parentsitehome.asp FamilyConnect gives parents of children with visual impairments access to message boards where they can talk to other parents, videos featuring real-life families, parenting articles, a mom-authored blog, a glossary of more than 30 eye conditions, and links to local resources. The site also features sections dedicated to multiple disabilities, technology, education, and every age group from infants to teens.
- littlehearts.net Parent support for parents of children with congenital heart defects.
- nationaldb.org National consortium on children who are deaf-blind. This is a federally funded information and referral serviced established to collect, develop and distribute information to help improve the education and lives of children and youth who are deaf-blind, ages birth to 21.
- nfb.org National Federation of the Blind
- rfbd.org Reading for the Blind and Dyslexic- recorded textbooks for students K-12.
- sbaa.org Spina Bifida Association of America
- tsalliance.org Tuberous Sclerosis Alliance- offers information and resources for families of infants and young children diagnosed with Tuberous Sclerosis- spiral bound resource guide for families is available.
State of Connecticut Resources
- huskyhealth.com CHIP- Children’s Health Insurance Program
- ct.gov/dds State Department of Developmental Services
- state.ct.us/sde State Department of Education
- For all Other Connecticut State Agencies (Executive Branch) visit ct.gov/ctportal/cwp/view.asp?a=843&q=246450
- ctkidslink.org Connecticut Kidslink- Voices for Children Website
- planofct.org Planned Lifetime Assistance Network of Connecticut, Inc. (PLAN) manages special needs trusts and implements Personal Care Plans so that parents of a child with a disability can have the assurance that someone will oversee their child’s services after they die.
Special Needs, Special Planning
One of my nieces has autism, so I am particularly sensitive to the desire of families with children with special needs to ensure that their estate plan does not render their children ineligible for governmental and charitable assistance for their expenses, medical care, therapy, housing and related items, through the use of a Special Needs Trust.
If you want to leave money or property to a loved one with a disability, but don’t want to jeopardize eligibility for Supplemental Security Income (SSI) and Medicaid benefits, you need to set up a “special needs trust” in your Will or revocable living trust. Leaving money outside such a trust could have disastrous results. While owning a house, a car, furnishings, and normal personal effects does not affect eligibility for SSI or Medicaid, even a well-meaning inheritance can often disqualify the recipient from receiving public benefits.