Parents with intellectual and developmental disabilities (I/DD)

by Alison Lozano I am clearing out my office in preparation to retire at the end of January. During that process I have discovered many pieces of paper that I have not looked at in many years, most of them are being deposited in the recycling bin. However, while accomplishing that clearing out task I found one important document that unfortunately I have not looked at in several years, my dissertation. In 2000 I presented my dissertation to the faculty of the Graduate School of Social Work at the University of Utah. It is just 151 pages, but it represents four years of travelling to three states, writing, rewriting, conferring with faculty, presenting, rewriting again and then defending. Having lived through that experience it is not hard for me to believe that approximately 50% of PhD students do not complete their dissertation within 10 years of finishing all coursework. The reason I am disappointed that I have not looked at it in several years is that it is an incredibly critical topic. The issue it studies has not been solved or significantly ameliorated since I researched and wrote about it between 1996 and 2000. There are still several thousand children every year who are removed from their parents, or never go home from the hospital after birth, simply because the parents have a diagnosis of mental illness or intellectual disability. When I completed my literature review for my research I found very little information on parents with I/DD. Fortunately now there is more research and information about the topic. One organization in particular, Through the Looking Glass, has a very good program and has completed valuable research on parents with I/DD. Approximately nine years ago an organization was formed that concentrated and brought attention to the issue, the Association for Successful Parenting. Despite the modest advances and attention that has been given to parents with I/DD over the past 10+ years, I suspect the findings from my research are still applicable. Several of the problems I identified that parents with I/DD face are poverty, abuse inside and outside their relationships, lack of self-esteem, poor reasoning skills and problems disciplining children. The parents who were the most successful were those who had resources and supports. In particular I found that if the parent(s) had at least one person in their life who assisted them both manage their daily life and their children, they were much more successful than those who were not supported. One mother in particular lived in an apartment complex with her son, who had learning disabilities. She had gathered around her people who assisted her in raising her son. The manager of the apartment complex watched out for her son when he was outside the apartment. The school bus driver would advise her if he was not dressed appropriately for the weather or if he seemed sick enough to stay home. The local church members took her shopping. Her caseworker made sure her bills were paid, public assistance forms were filled out and regular medical visits were accomplished. With the help of these formal and informal supports she was raising her son very successfully. She was a very devoted mother and it showed by the respect and love her son showed her. As a society we have determined that people with I/DD have the right to live a life that parallels the lives of everyone else. It would follow that people with I/DD would also want the relationships that most people enjoy, and sometimes that includes children. As a society we need to address the supports the families need to raise their children because often they are very dedicated and loving parents, they just need some help with the everyday responsibilities of child rearing. Taking the children away from their parents is not usually the answer. It results in children being raised in the foster care system and parents who grieve for the lost opportunity to care for their offspring. The supports parents with I/DD need to raise their own children depends on their individual needs and their living circumstances. As with all other social services, each family needs to be thoroughly evaluated by a system that is more committed to enriching people’s lives than cost cutting. An ideal model is the one in Sweden where the children(ren) and parent(s) are fostered by another family where the parents do not have intellectual disabilities. On the other hand, some families may just need help with paying bills. It is critical to do whatever it takes to try to keep the families intact. I expect I will find and read my dissertation again in the next few years. I hope when that happens I can go on line and discover that services and supports for parents with I/DD have improved greatly and there are more parents who are parenting their own children. But this will only happen if our budget decision-makers, social service system and communities see this as an important issue. Alison Lozano, PhD