This is a curated guide of resources for families of children with special needs. Location-specific resources are provided for the New York City area, but much of our guide is useful regardless of where you live. Our mission in creating this guide is to help special needs families find services, support, purpose, and community, all of which are essential in living with disability.
To make this wealth of information accessible, we've divided our findings into individual tabs that align with different categories of information. We'll be covering topics like: how to get financial assistance, how to get a personalized education plan for your child, how to find fun local sensory gyms, and we even suggest some great books and podcasts to enjoy!
Regardless of the specific need in your family, we hope this guide will allow you to find the resources you need to help, understand, and celebrate your child.
NOTE: While we hope this guide is helpful to you, please note that this information was put together by three students of library science who are by no means experts in the field. For expert consultation, please see the resources provided within the guide.
One of the first things you will notice within the world of special needs is that it has its own lingo! Everything is an acronym: IEP, CPSE, OT, ADA, etc. It can be overwhelming! You will get used to them (just like you did with ATM, URL, and NYC) but here are some glossaries to help you out.
What do all of these acronyms mean? (IEP, OT, etc)
Complete definitions for terms and acronyms
Want to play Acronym Soup?
There seems to be SO many darn acronyms in the special needs services community. For a fun way to help navigate these endless abbreviations, click "Start Game" below!
The purpose of this LibGuide reference is to create a central hub of information that addresses the needs of families of children with special needs who reside in New York City. A strong understanding of who these families truly are – what they care about, what issues they face, how they have currently been managing the care of their children with special needs – is essential in creating a guide that truly serves the intended audience. To this end, this bibliographic essay provides an introduction to the common concerns and issues facing this audience, and the academic literature and studies supporting the purpose of our guide. Ultimately, the research supports a common finding: that it is not enough to have supportive services in place for families of children with special needs – the topic of care is so stressful and intimidating that families need assistance in finding resources, and support groups, to use the resources available to them.
THE PROBLEM FACING PARENTS OF CHILDREN WITH SPECIAL NEEDS
In their 2003 paper, Barnett, Clements, Kaplan-Estrin, and Fialka state that every 3.5 minutes, a parent is told that their child has a serious chronic medical condition, or disability. The sheer magnitude of this figure helps bring light to the seriousness of this issue. In their paper, they explain that how well a parent adapts to their child’s diagnosis directly predicts “both family well-being and their child’s attachment security.” It is therefore essential to have tools and services available to support parental adaptation. They review the three stages of acceptance that parents go through in reaction to realizing/hearing about their child’s condition – grief, recovery, and adaptation. Furthermore, they examine the success of parent group interventions to facilitate the progress through this cycle. At the of the study, they determined that the “size of the family support system is the best indicator of parental quality in children with or without special needs.” According to Smith, Hong, Seltzer, Greenberg, Almeida, and Bishop (2010), without this supportive structure, parents face “levels of chronic stress … similar to those of combat soldiers.” Their diary study followed 96 mothers and autistic children for 8 days, whereby mothers were interviewed at the end of each day, and saliva samples were taken every four days. They found that these mothers tended to spend two more hours each day caring for their children as compared to non-autistic children’s mothers. Ultimately, this study also found that there is a significant need for family support services. However, the question remains: how can we know where to begin in assisting parents with finding family support services? Gowen, Christy, and Sparling (1993) conducted a national sampling of 367 parents of children with special needs, where the children were aged birth to 8 years, about their informational needs on this topic. They found that the most major need identified by parents was “how to promote the development of their children with special needs.” This was closely followed by the need to deal with emotional and time demands, financial planning, and resource identification. Considering the emotional and stress toll present for parents of children of special needs, the significance of support systems, and the major information needs present, this guide attempts to help parents gather pertinent resources available to them in the New York City area.
Barnett, D., Clements, M., Kaplan-Estrin, M., Fialka, J. (2003). Building new dreams: Supporting parents’ adaptation to their child with special needs. Infants & Young Children, 16(3), 184-200. Retrieved from https://journals.lww.com/iycjournal/Fulltext/2003/07000/Building_New_Dreams__Supporting_Parents_.2.aspx
Gowen, J.W., Christy, D.S., Sparling, J. (1993, April 1). Informational needs of parents of young children with special needs. Journal of Early Intervention, 17(2), 194-210. doi: https://doi.org/10.1177/105381519301700209
Smith, L.E., Hong, J., Seltzer, M.M., Greenberg, J.S., Almeida, D.M., Bishop, S.L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 40(2), 167-178. Doi: 10.1007/s10803-009-0844-y
Education is one of the central areas of concern for parents of children with special needs. In New York City, we found that there are indeed services in place to assist these families, however, these services are not functioning at maximum output. Harris (2017) found that in 2016, over 10,000 students did not receive the mandated special education services they were entitled to. In New York City alone, over 200,000 students have IEP’s – individualized education plans – that parents jumped through many hoops of paperwork and approvals to acquire for their children. These IEP’s entitle children with special needs to special education services in the New York City area and provide “services for difficulties like speech impairments, emotional disturbance, and learning disabilities” (Harris, 2017). Many of the city-wide issues that are preventing the level of services that are required include the need to hire staff, to expand program centers, or even location-based issues like there not being “enough therapists in some corners of the southeastern Bronx” (Harris, 2017). There is a clear inequity in the level of service provided to children with and without special needs, which shows that even with parents taking advantage of local services, their needs may still not be met. Another study supporting this message was conducted in 2007 by Janus, Kopechanski, Cameron, and Hughes, showing that in a 10-year period, still not much has changed by way of policy effectiveness and socioeconomic barriers. Learning about available services is key – but more work must still be done in terms of advocacy to make these services more effective.
Harris, E.A. (2017, November 1). Thousands of city children not getting special education help. New York Times. Retrieved from https://www.nytimes.com/2017/11/01/nyregion/special-education-nyc-schools.html
Janus, M., Kopechanski, L., Cameron, R., Hughes, D. (2008). In transition: Experiences of parents of children with special needs at school entry. Journal of Early Childhood Education, 35 (479-485). Retrieved from https://edi.offordcentre.com/wp/wp-content/uploads/2015/06/In_Transition_ECD_20081.pdf
Aside from educational services, financial concerns and constraints prove to be one of the most negatively impactful issues facing parents of children with special needs. According to Kuhlthau, Hill, and Yucel (2005), 40% of families with children with special health care needs (CSHCN) have financial problems due to the level of care their child requires. Out of pocket costs are often more than double that for parents of children without special needs. The article reviews the SSI (Supplemental Security Income) program which can help assist parents in covering some of these support costs. However, it also points out that this program is meant to serve 2-3% of children with the most severe issues. Again, this points to the overarching issue facing parents of information poverty – even when services do exist, do they meet the need of that particular parent or family? According to Looman, O’Conner-Von, Ferski, and Hildenbrand (2009), the most financially and emotionally successful families are those “whose healthcare providers communicated well with other service providers and who helped them feel like partners in their child’s care.” These families were “less likely to report financial and employment problems.” It is clear that an open dialogue with their providers, a true partnership-based approach, and an understanding of the range of services available to meet their needs is key in effectively assisting families of children with special needs.
Kuhlthau, K.A., Hill, K.S., Yucel, R. (2005). Financial burden for families of children with special health care needs. Maternal and Child Health Journal, 9(2). doi: 10.1007/s10995-005-4870-x
Looman, W.S., O’Conner-Von, S.K., Ferski, G.J., Hildenbrand, D.A. (2009). Financial and employment problems in families of children with special health care needs: Implications for research and practice. Journal of Pediatric Health Care, 23(2), 117-125. doi: https://doi.org/10.1016/j.pedhc.2008.03.001
ADVOCACY AND BEYOND
As we seek to understand the scope of needs facing these families, advocacy on behalf of their children and their own emotional needs cannot be overlooked. A 2014 paper by Wright and Taylor investigates the efficacy of different types of advocacy efforts by parents of children with special needs. The authors conducted an online survey of parents with special needs children from ages birth – age 6, and found that parents often begin advocacy efforts at birth (or at first diagnosis) to help with school services, medical care, and even via social media for general public awareness and support. Overall, those parents who were more active in advocacy efforts were found to create self-empowerment and efficacy through the creation of support groups and other such efforts. This shows that advocacy is not only important for these families’ children but for the parents’ own emotional wellbeing and support network creation. This LibGuide seeks to provide resources for parents to get more involved in advocacy efforts, and in building their own extended support network for the emotional wellbeing of the entire family.
Wright, A.C., Taylor, S. (2014). Advocacy by parents of young children with special needs: Activities, processes, and perceived effectiveness. Journal of Social Service Research, 40(5), 591-605. Retrieved from http://ro.uow.edu.au/cgi/viewcontent.cgi?article=2297&context=sspapers
In all, the literature review on the topic of parents with special needs is extensive and well-documented. It considers emotional, financial, advocacy, and educational efforts that parents must put forth to help their child succeed and demonstrates the immense stress load that parents face as compared to parents of children without special needs. One of the major themes that emerged from this review was the overwhelming need for parents to feel that they are part of a larger group – in other words, that they are not facing this issue alone – and that there are services out there to assist them. Using the New York City area as our scope, this research team has created a LibGuide to promote local services, organizations, and programs that may help such parents meet their goal of inclusion and success for themselves and their beloved child.