Office of Epidemiology and Research, Division of Research

Advancing Applied MCH Research

Youth with develop developmental disabilities transitioning into adulthood


Sue Lin - Project Officer - Maternal and Child Health Bureau
Welcome to the Maternal and Child Health Research Dialogue. My name is Sue Lin, I am a MCH Project Officer at the Maternal and Child Health Bureau and the host for this podcast. The Maternal and Child Health Research Dialogue is a new podcast series sponsored by our bureau to feature the latest research on children, moms and families. And now to a conversation about youth with developmental disabilities transitioning from adolescents to adulthood. This transition process is often complex requiring a coordination of multiple service providers, access to affordable health insurance, identification of educational and vocational opportunities, and development of independent living skills. Today we're talking with Dr. Penny Hauser-Cram, Professor at the Boston College and the principle investigator of Early Intervention Collaborative Study (EICS) on young adulthood. This is a longitudinal study of 150 children with developmental disabilities and their families from the time of early intervention services to age 23. Her research team has looked at these critical transition issues from the youth, parents, siblings and overall family perspectives and she is with us now. Penny, thank you so much for joining us.

Penny Hauser-Cram, Ed.D., Professor Boston College
Oh, thank you Sue, I'm delighted to be here and I'm thrilled that Maternal and Child Health Bureau is doing this podcast.

Sue Lin - Project Officer - Maternal and Child Health Bureau
Terrific, I'm going to start off our conversation with a first question, the Early Intervention Collaborative Study is a longitudinal study that has followed children from infancy to age 23, can you give us a little perspective on the history of the study and how it all began?

Penny Hauser-Cram, Ed.D., Professor Boston College
Certainly, the study began actually over 23 years ago, it began about 25 years ago in its planning phase and it was started by Dr. Jack Shonkoff who is a pediatrician at Harvard. And he put together a study group of folks who were interested in early childhood and in child development and particularly interested in early intervention services. We went from a group of about 8 or 10 of us to a group of 3 or 4 of us a year later because we met on a voluntary basis weekly and developed a planning grant that was initially funded to actually plan a study on early intervention. So, we planned the study and then actually Maternal and Child Health Bureau funded the first phase of the study, which was to look at children and families as they went through their first year in early intervention services. Our intention was really to look closely at early intervention, look at its effectiveness in terms of how children were developing and also how families were adapting to raising a child with a developmental disability and perhaps to be able to use that information to develop future studies on early intervention.

However, after we completed the first year and completed our analysis, many people asked us well what happens to these children after they leave early intervention? So, we decided we would follow the group into preschool as they made the transition from early intervention into preschool services and the rest is somewhat history. Because every time we thought we were at the end, many people would speak to us about the importance. Particularly, families would speak to us about the importance of knowing what happens next and so now we have followed this same group from the time they were first diagnosed as infants and toddlers to the time that they're age 23. They are about a year out of the school system. So, what started as what we thought would be a one year study has ended up being a 23 year study with many different rounds of funding from Maternal and Child Health Bureau and we're very grateful to Maternal and Child Health Bureau for that. As you can imagine, we have a lot of different findings over the years for children and families at different phases of their lives and interacting with different service systems.

Sue Lin - Project Officer - Maternal and Child Health Bureau
Dr. Hauser-Cram I thank you for the contribution that you have made to helping the field understand all the various issues that the families have confronted and it sounds like there have been multiple stages that we can cover in other research dialogues as well. Let me focus more on the transitions to adulthood data that you are currently collecting and talk a little bit about these kids that you have followed into adulthood and what have you found to be the most important things to them? In particular, what excites them most and what worries them most about the future?

Penny Hauser-Cram, Ed.D., Professor Boston College
Well, I can think of two different ways of responding to this. One, is from the point-of-view of the young adults themselves and so I will start there, and the other is from their parent's perspective. In terms of the young adults I think what they are most excited about at this age of around 23 is their work. Any kind of employment that they have, they love to talk about that. It has given them a great sense of self-worth, and given them also a kind of social support system. So employment seems to be really important. Those who have not been able to find jobs but want them are very discouraged and of course in our current economy it is even harder for people with developmental disabilities to find employment. So, this is a particularly difficult time for these young adults to be making this transition from school into employment.

Another thing that really excites them is their boyfriends and girlfriends, and they love to talk about those relationships. Those who have those relationships love to talk about them, and are like young adults everywhere happy that they are able to have a social life and to have some partnerships with others. So, that is, I think from a perspective of the young adult that's what they enjoy talking about and telling us about what they're most proud of and what they like to do right now in their lives.

From the perspective of parents, I think we hear more about concerns from parents then we do from the young adults themselves and the parents' biggest concern is loneliness. A concern is that they're child will not have a network of friends or does not have a network of friends. This is particularly true at this particular transition point around age 20-23 because when their child was in school there was always a network of possible friends, acquaintances, people to do things with, but they now have seen those friends go off to college, go off to have other lives and the young adult with a developmental disability is often at home without a social network. That is particularly problematic I think from the point of view of the parents.

We actually ask one question of the young adults, we ask them if they could have three wishes what would they want, and friendships always come up as I want more friends as one of the three wishes, it is a very frequent wish they have. They also wish for more money and more vacations, and things like that, that anybody would wish for. But they talk about friendships there as being so important and somewhat lacking in many of their lives, although certainly not true for all of them.

The other thing that parents talk about is the lack of a daily structure for the young adult. As they look back on the school years, there was a highly structured program for children. They knew where their child was from the time they were age 3 on in terms of the school setting and they knew the vacations, and they knew the school schedule, and they pretty much knew how school operated. It's very different now for those who have completed their schooling and are looking for work or are trying to get the skills to be able to work. There tends to not be a daily structure and that has been very problematic for some families. It has also meant that some parents have had to change their work schedules to stay home with their young adult. So, this transition out of school has had some major implications not for all families but certainly for many families.

The other thing that parents have talked about is the lack of a formal learning structure for their child. They realize that those who have been able to go on to community college for example have continued in their learning opportunities. But those who have not been able to do that are often without lots of opportunities for learning new things, the parents feel that this is a missing piece in their lives.

Sue Lin - Project Officer - Maternal and Child Health Bureau
It sounds like the families are experiencing that sort of falling off a service cliff as they exit out of the educational system and into the adult service system. Are there particular issues and concerns that your research team has learned about differences between boys and girls who are going through this transition period right now?

Penny Hauser-Cram, Ed.D., Professor Boston College
In particular there is one important finding that we have about the difference between boys and girls. It is a troubling one. The girls have a very high rate of depressive symptoms, as well as low self-esteem. Both of these are self-report measure where they are reporting on one of the standard scales of depressive symptoms that have been used in public health for years. So, we have a lot of comparisons that we can make. At first, we thought maybe there is some kind of bias going on here where the young adults are answering all the questions the same way. But because of the way the scale is constructed if you were to do that actually it would be problematic because some of them are reverse scored.

So, we looked carefully to see if there was something that we were missing because the rates of depressive symptoms were 40% of the girls are over the clinical cutoff on these scales. We then looked at what the correlates are of these depressive symptoms and again, it is friendship and the lack of friendships that seem to be really key. The other important thing is the relationships within the family, relationships with siblings, and relationships with other family members. When those relationships are positive, then that predicts fewer depressive symptoms. But when those are relationships that are struggling then the young adults are having more difficulty around feeling good about themselves and feeling that they have stable mental health.

Sue Lin - Project Officer - Maternal and Child Health Bureau
It sounds like the adult service system needs to provide social networking support for these young adults as they transition and look at how to build their friendship networks and other components to help support them in this way. Now, you had talked a little bit about the parents concerns about the child's loneliness, the lack of networks of friendships. Can you talk a little bit about any differences you may have learned about the maternal versus the paternal perspective?

Penny Hauser-Cram, Ed.D., Professor Boston College
Definitely and those are two very different views. However, there are some similarities. I am going to talk first about some surprises that we have. We have looked at parenting stress over this entire life course from infancy to age 23 and we have looked at differences in mothers and fathers in the course of their stress around parenting their child. Some of the surprises, we expected the highest level of parenting stress to be when their child was first diagnosed with a disability and then we expected another point at which these stress levels might be high, which we thought would be in the adolescent period around age 15-18, and we were wrong. And it is always sobering to know you are wrong. But also I think it is really important to look at what the data say and in this case we found that for both mothers and fathers the highest level of stress occurs when the child is around age 10.

So, we have accelerating stress for both mothers and fathers from the time the children are infants to age 10 and then a slight deceleration in stress around age 10 to 15 or 18. We have not finished the analysis at age 23 so I can't tell you where we are with that yet. But I think we took this to our parent advisory board. One of the smartest things we've done in this study is to have parents who have children about 2 years older than children in our study as our advisors. We also have a policy advisory board which has been very helpful around formulating some of the questions that policy makers have. The parents have been very good at giving us feedback on why they think our results are as they are and what are the next questions we should be asking.

And the parents said to us that parental stress at age 10 makes perfect sense to them. We asked why, and they said because that is the age at which our children who have been included in schools and classrooms for the most part, the majority of these youngsters despite having significant cognitive impairments are in inclusive classrooms and inclusive schools. Age 10 is the point at which other children start discriminating against them, not inviting them to birthday parties, and not inviting them to sleep overs. It is a time when sports activities are taking off very rapidly for typically developing children and sports teams occupy their social life and social network during the weekends. And so that is the time when it becomes more stressful for parents. So, we found that this was very useful information for us.

When we started to look at children's loneliness and friendship networks with more depth, we found that the parents had really let us know how important this particular age is. They pointed out that other parents when their child is younger will say “you invite everybody to your birthday party, everyone in the class comes or all the girls come or all the boys come.” At age 10, the parents are starting to maybe be tired of the whole class birthday parties but also to feel like their child can make a decision about having a couple of close friends to do particular activities with rather than to try to be inclusive of everyone. So I think it is a natural change that occurs around middle childhood but it has been particularly difficult for the children with disabilities.

The other thing about mothers versus fathers that I wanted to bring up and this relates somewhat to what I was just talking about is that fathers have talked about being the invisible partner and they consider the fact that the service system has virtually ignored them. I had one father who told this story that has always stuck with me on how his child's pediatrician would talk to the child's mother but not talk to him even when they were both together in the pediatric visit. What he learned to do was to put the child on his lap so the pediatrician would look at him and talk with him as well and include him in the discussion.

Another father has talked to us about being left out of the neighborhood social network because his child who has cerebral palsy is not able to participate in the sports. Therefore, the father took the child in the wheelchair every Saturday and would walk around the soccer field so that he could mix with the other fathers because he felt like he was left out of the neighborhood social network because his child was not participating in the sports teams. This continues into the school system where mothers more than fathers are ones who are often spoken to about what is going on in school, and so fathers have pretty much felt like they have not been paid enough attention to. I think that many service providers are now trying to correct that, but I think it is important for everyone to keep in mind.

The fathers do have different concerns than the mothers. They also have different experiences with what they see as the benefits of the different service systems. For example, in early intervention, the mothers felt that they had received a great deal of emotional support and that was a very useful part of early intervention. The fathers felt that they had learned a lot about how to advocate for their child and that is what they saw as the important pieces that they gained from early intervention services.

So, mothers and fathers do have different perspectives, but they are both really important to learn from and for years we made the mistake as psychologist of having the mother report on the family and I think many of us now realize that we were missing an important part of the picture. So, just putting a plea in for people to consider fathers and father's viewpoints and how important they are.

Sue Lin - Project Officer - Maternal and Child Health Bureau
That is a wonderful insight. I think we have focused on supporting moms as they are coordinating the medical care and the educational services for the child but have often neglected the father's role and supporting the father in their journey through this process as well. So, I think your research speaks to a lot of that and certainly the service system needs to be mindful of how to best support both parents through this process.

You talked a little bit about their interactions with service systems like early intervention. Did the parents speak to you more about the educational service system that they interacted with? What are some of their feedback about the educational system thus far and perhaps also touch upon, if you could, also the adult service system that they are coming into interaction with?

Penny Hauser-Cram, Ed.D., Professor Boston College
Well, parents have a lot to say about service systems and especially when they are in a service system. Sometimes their perspective after they have left the service system is a little different then when they were actually in it, because they begin to see some of the benefits they received in the service system that they did not even realize until they no longer had those benefits. That is particularly true now as we see them leaving the education system. They begin to look back on the benefits of the education system for their child, whereas at the time many of them had mixed feelings about it. For example they felt that the child was getting some good services here, but would like more services or more occupational therapy, or physical therapy or speech and language therapy than they are providing. But now as they have left that system and there is no system that is really there for them, they realize the benefits of the educational system.

The transition out of education is a really tricky one and almost every family has said to us we have not had enough time to plan for that transition. At age 15, we found only 1% of the families had, had any discussion with people in the schools about transition. Most parents reported that the discussion about transition out of school began the last year their child was in school. Almost all of the family felt that was too late because there are very few services available beyond school. Even in a state like ours in Massachusetts where we are known for having some really strong service systems, often a child is eligible but cannot receive the services or can receive the services but no transportation. So, for example going into Day Habilitation Programs, either there are no placements or if there are placements it is very hard to get transportation to those placements.

So, parents are at a loss for what to do next. Again it depends on the cognitive and functional skills of the child. Those who have only somewhat moderate impairment in their cognitive functional skills can often find employment or at least search for employment in their local communities. If they have lived in that community a long time, people who know them will often hire them or they might go to a community college with a lot of extra support, which has been successful for a small but important group of our sample. But those who need Day Habilitation Programs have found this piece to be really missing. So suddenly the school program looks like it was wonderful in comparison to moving into this abyss.

The other thing that we have learned about the service systems is throughout our times of visiting families they continue to talk about early intervention as a wonderful, wonderful experience for them and even though that was a time their child was just diagnosed. They were learning about developmental disabilities, how to even position their child, and how to feed their child. There were many struggles they had at that point in their life, but they continued to feel that early intervention made such a difference in their lives in helping them get on a positive trajectory with their child and with advocating for their child with the service sector.

So, I am always struck by the fact that they continue to want to talk about early intervention and the benefits of early intervention. I am especially struck by it by how little they actually received, in the way of services in early intervention, which was an average of 2 hours a week, and how much they feel they gained from the services, which I think is quite remarkable when you consider that it is a fairly meager service in terms of time that is actually spent with the family, but yet a very important one for the families.

Sue Lin - Project Officer - Maternal and Child Health Bureau
It sounds like the service systems need to share lessons learned from each other so that we can better support families and that families are seeing the differences as they transition out of each of the different service systems and coming out with a lot of different reactions to how best the systems can support their kids and their families.

Penny Hauser-Cram, Ed.D., Professor Boston College
You know as you say that Sue, I am thinking about early intervention being very family focused, the school system being very child focused and then the adult system being haphazard, that it is the family focus I think that in early intervention that made such a difference and that the more that this can be brought into other service sectors probably the more that this will be useful to these families as a whole not just to the child. But, I think that you are right in terms of systems talking to each other and learning from each other.

I wanted to just put one other plug in around service systems which is one of the service systems that families are having a really hard time having any contact with is dental health services. Dental It is very hard to find dentists that actually will provide services to people with developmental disabilities. That is an area that I think we need a lot more work on in looking at and trying to figure out how to help, because as we know dental health is important to the physical health of the youngster. Families have stories of going to many, many dentists who will not see them.

And one other point that I just want to bring up around service systems while we are on that topic is that we've asked parents about the transition from pediatric to adult services that generally occur around age 21 for most families. About 1/3 of our families say that they were given no preparation for that transition. They were just told when their child turned 21 that they would have to find a new family care physician for their child and would have to move out of pediatric services. So, that is another area we still have a lot of data to analyze around that question But that is another area that I think is really important that we look at in terms of service systems and doing a better job.

Sue Lin - Project Officer - Maternal and Child Health Bureau
Yes, it is definitely both the health and educational dimension. Now, I wanted to go back to a point that you mentioned earlier about siblings, the other part of the family that we have not touched upon in depth yet. Can you tell us a little bit about your current findings on siblings?

Penny Hauser-Cram, Ed.D., Professor Boston College
We have been looking from about age 15 on at the role of the siblings in supporting the child with developmental disability. This actually came from our earlier data at age 10 when the child with a developmental disability would say that their best friend was their sibling. We realized that we needed to look more closely at the siblings and the sibling relationship. Now we are finding that is even more important because about 60% of the siblings in our sample expect to be guardians of their brother or sister with a disability. So, that is a major undertaking for them and we are looking closely at what kind of predicts positive relationships and what predicts more troubled relationships between the siblings.

There has been a history in the literature on siblings of looking at difficulties for the typically developing sibling who might end up with behavior problems or high levels of depression or some kind of maladaptive behavior because they have been asked to either give a lot of care to their sibling or that they somehow feel like they have been overlooked in the family because of the attention on the sibling. And we have actually found that this is not so true of the siblings in our sample, in fact they have very positive relationships with their sibling. We do find there is more caregiving often by females than by males to their siblings. If you look at other aspects of that relationship like providing instrumental support, doing leisure time activities with their sibling that are very similar for brothers and sisters, then probably these siblings spend more time with each other than siblings of typically developing siblings do during this age period, which is the adolescent or early adult age period.

But we are finding some very positive relationships that exist especially in families where the family climate is quite positive and where the parents are quite effective in parenting their children. The sibling relationships seem to be quite positive. We asked many of them to tell a story or draw a picture of their relationship with their sibling with the disability. Many of those brothers and sisters talk about how proud they are of their sibling with the disability and how that has given them such an opportunity to be a cheerleader for their sibling and also so much respect for people with disabilities. So, there are some very positive outcomes. I am not suggesting that this is true for everyone. There are certainly some families where the sibling relationship is troubled, but I think that we need to look at a more balanced view of siblings and their relationships and especially given the fact that many of these siblings are going to be guardians and that is a very important new phase for them to step into when they themselves become adults.

Sue Lin - Project Officer - Maternal and Child Health Bureau
It sounds like another area for further research as well.

Penny Hauser-Cram, Ed.D., Professor Boston College
There are many of those.

Sue Lin - Project Officer - Maternal and Child Health Bureau
We are coming to the end of our dialogue and I wanted to ask you the larger policy implication question. Within the context of healthy development of these children with developmental disabilities I wanted to ask you to speak a little bit about the policy implications of legislations like No Child Left Behind and what are your policy recommendations for the educational system and their role in transition for these young adults with developmental disabilities?

Penny Hauser-Cram, Ed.D., Professor Boston College
Well No Child Left Behind was passed at the time when we were actually studying these youngsters in school. So, it has both been an opportunity for us. Also, I think it has brought some real challenges to both the service system and the families. Some families feel very positive about the effects of No Child Left Behind which has been to make sure that their child is getting academic input in school. We have some wonderful stories of youngsters with Down syndrome for example who are passing the state mandated test because the schools have paid attention to their academic needs. So, I think there are some real positives of No Child Left Behind.

On the other hand, the families for which children have very significant cognitive impairment seldom know much about portfolio assessments for example, know little about No Child Left Behind and how it may or may not affect their child. They seem to be kind of lost around those questions and even though many of the schools had actually completed portfolios on many of these youngsters the parents seemed totally unaware of that. So, there is some kind of mismatch for that group around understanding No Child Left Behind.

Now, I should say though, to give us some context, that within our sample the majority of youngsters completed high school with a certificate of attendance not with a diploma. And they would only have received a diploma if they could pass the state mandated test. So, we have a small group who were able to pass those tests and did receive a diploma. The majority of the youngsters in our sample were not. This is partially because these are for the most part children with significant cognitive impairments and for those people whose IQ or functional skill ratings were in the 50s and 60s for a sample as a whole, which is significantly lower than the 100 that would be for the typically developing population. So, it is a particular group we are looking at.

In terms of your second question, Sue, about recommendations, the school system is the one place where people get together to talk about the child and parents along with a variety of service providers within the school work together to make plans for the child. The pieces that are left out though are so important and in my view need to be brought in. The last thing I want to do is burden schools with more. But schools seem to be a logical place where we could bring in a more holistic view of the child's needs the service needs. So, for example, the child's medical and health needs are not for the most part brought in to the discussions around Individualize Education Plans (IEPs). But those need to be a part of the kinds of services the child is to receive and a part of the understanding of the child, in terms of the child's development. So, instead of operating as parallels, these need to operate together and be integrated.

Another example is social security. A number of children in our sample qualify for social security but the parents are totally unaware of that. The school system is unaware that they could be giving people information on this and there are probably other services as well. What we need is a central location for people to have resources, be able to get resources and other than a few advocacy organizations, some of which are very active and wonderful in our state, but not all states have those, we need a location where parents can go and get information about the various services that they are entitled to or their child is entitled to. So, it seems right now the school seems the logical place because that is one place where people do need to get together and talk about the child and plan for the child's future.

Sue Lin - Project Officer - Maternal and Child Health Bureau
Definitely, I think if other service systems can come into support the educators and the school systems through this transition period, then the school would be an ideal location for parents and service providers to convene and make those important decisions with the young adult with development disabilities as they enter into adulthood.

Well, we are at the end of our research dialogue for today. I want to take this opportunity to thank Dr. Penny Hauser-Cram for her time, her dedication to this field and her contributions in the research for this particular population.

Penny Hauser-Cram, Ed.D., Professor Boston College
I want to thank you, Sue, for your questions and I want to thank Maternal and Child Health for their support of this project.

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