Programs and Services for Children with Disabilities: Parents Lack Information

Parents of children with visual impairment need many connections to access support.

By Rani Elwy, PhD

One lesson I have learned as the parent of a medically complicated child is that information on programs for children with disabilities is rarely provided voluntarily. Yet, navigating the world of disability services and programs is bewildering. Here is my story.

Arriving in greater Boston with a 13-month-old son with an undiagnosed disorder but with obvious physical impairments, and a healthy 4-year-old daughter, my husband and I were faced with the daunting task of figuring out how best to help our son. Navigating the medical world was complex enough (Ghose, 2003), yet our son required other therapeutic, educational and social services to reach his potential, and our family needed financial information related to raising a child with disabilities. It was not clear where we needed to start.

At a neighbor’s party three weeks later, a woman, recognizing our son’s special needs because he was wearing ankle-foot orthotics and thick glasses, asked us if we knew about the Early Intervention (EI) program. We did not. We had not yet seen our new pediatrician or any other health care providers. It took me a couple weeks before I investigated the EI program, but an Internet search provided easy access. I found our local center and emailed the director. She promptly returned my email, saying that she had forwarded our information to a service coordinator. The information-seeking process had begun, but it was far from over.

The EI process, an email, a telephone call, three visits, and then more phone calls to schedule services, did not result in the provision of information about other programs for children with disabilities. My husband and I were busy with our careers, our children and researching medical subspecialists for our son, and we did not have time to search for other programs. EI did suggest that I join a support group for parents of medically complicated children. I was reluctant to attend, but it was through this group of mothers of children different from mine but whose lives had been impacted similarly that I have learned more about programs for children with disabilities than I would ever have on my own. Here I learned about the Federation for Children with Special Needs (FCSN), and this information opened doors to other information.

On the FCSN website, I learned about Mass Family Voices, a chapter of a national grassroots organization giving ‘voice’ to families of children with disabilities. I have connected with a woman online whose son was born days after mine and who has similar complications. I do not know if we will ever meet, but her virtual friendship and support is a blessing. Through the support group, I learned about respite funding and an equipment loan program from the Department of Public Health’s (DPH) Step One Regional Consultation programservices we now benefit from. On the FCSN website, I also learned about Care Points, an organization that partners with Boston colleges and is devoted to helping families of medically complicated children. I then became aware of the possibilities of Boston’s many college students studying physical, occupational or speech therapies, or studying special education, who could potentially serve as qualified respite providers. After contacting Boston University, Simmons College and Wheelock College, we now employ two reliable students studying physical and occupational therapy who have extensive experience of working with children with special health care needs. Support group members also informed me of services provided by Perkins School for the Blind. I searched Perkins’ website and contacted the Preschool Division, and soon my son received a visit from a Teacher of the Visually Impaired (TVI). This person has served as a true advocate for my son in his preschool setting, where vision impairments are often overlooked in the design of classrooms and activities. Our TVI also recommended further ophthalmology exams that we would otherwise have missed out on.

I have attended seminars and meetings where I have learned even more information that directly impacts my son and his care, such as the process by which a child transitions to public special education services at age three and workshops aimed at informing parents about technology to aid feeding and swallowing disorders. I have also connected with the American Academy of Pediatrics to provide information on my experiences with the Medical Home initiative and how these experiences have impacted our lives. While attending a Mass Family Voices parent conference, I received a resource booklet from Family TIES (Together in Enhancing Support), a sub-organization of the FCSN. I devoured this like it was the latest New York Times bestseller. Here I learned about programs as diverse as hippotherapy, Easter Seals, adaptive swim instruction, assistive technology, and more. From the Mass Family Voices listserv, I became aware of the DPH’s Bureau of Family and Community Health and the Catastrophic Illness Fund for Children. Additionally, I learned of the CommonHealth (Medicaid) insurance program for children with disabilities, which after a lengthy application process accepted my son.

At my support group, I found out about the Health Insurance Premium Payment program (HIPP), administered by the DPH’s Division of Medical Assistance, to families that receive CommonHealth. We now receive HIPP payments monthly. Through the CommonHealth website, I learned of services from Personal Care Attendants (PCA), and through my support group, I learned how to apply for these services. On the application form for a PCA evaluation, I saw the question, “Is your child registered legally blind with the MA Commission for the Blind (MCB)?”. Knowing that my son’s visual acuity met legally blind standards, I wondered if he was registered. After many inquiring emails to the MCB, I sent in my son’s recent vision report, and within days, my son was registered with the MCB as legally blind. Through MCB, we received more support from a social worker, more information about assistive technology, and more respite funding.

Ironically, after 15 months of navigating the confusing world of disability services and programs, a Care Coordinator from DPH contacted me after my son was flagged as medically complicated on a recent respite application to the Step One Regional Consultation program. This very warm and communicative person informed me in about 10 minutesof all the programs and services I needed to know about that could help my son. When I told her that we were receiving these services already, she congratulated me on being such a good advocate for my son. It was a bittersweet moment.

Now, I find myself reflecting on the past and wondering how this experience can change the future. Goffman (1963) states that those affected by a person’s disability cope by professionalizing themselves, examples of which include advocating for the rights of the disabled and serving as members in organizations aimed at helping those with disabilities. I agree with Goffman, but I do not think advocacy is a coping method. I think advocacy is due to a very conscious desire to ensure that others have an easier time coping with and learning about disability than oneself did. As such, here are my suggestions for improving future communication about disability programs and services:

1) Very basic information can be provided to new EI families without causing them to be overwhelmed. DPH provides terrific one-page fact sheets of programs and services that would benefit most families of children with disabilities. Given that EI is a program of DPH, these fact sheets should be provided to all new intakes in the EI program. Providing a Family TIES Resource Book to families would be even more helpful.

2) Tailor provision of information to working families as well as families where one parent stays at home with the children. I have never been able to attend EI playgroups or daytime meetings, and at these meetings, I may have had access to the kind of information I longed for. Very few programs are offered in the evening; Perkins School’s parent evening meetings are a rare exception. Increasing evening and/or weekend playgroups and meetings is necessary for reaching working families.

3) Use information technology to reach all families better. EI programs could set up websites and password-protected information on groups, meetings, and workshops that all families could access, whether or not both parents or one parent works. A more local model of the Mass Family Voices listserv could be employed at each EI center, or EI-wide. This listserv could be an extension of the type of help I received from my support group. Dissemination of information could progress rapidly, and questions could be posed more easily, with answers readily available from experienced parents or EI staff to parents looking for this information.

4) Pediatricians should refer all children with medical complications to DPH Care Coordinators, thereby saving families of these children months of time and anguish spent needlessly searching for disability information when this is readily available from a knowledgeable and approachable Care Coordinator.

Ghose R. (2003). Complications of a medically complicated child. Annals of Internal Medicine, 139 (4), 301-302.
Goffman E. (1963). Stigma: notes on the management of spoiled identity. New York: Simon and Schuster.

Rani Elwy is a research psychologist as well as the parent of a special needs son and a healthy daughter. She studies patient-physician communication and its impact on quality of care.