Webcast KMCO Archives

Special Needs Adoption and Family Health Insurance

Originally broadcast: April 25, 2001

Faye: Hello and welcome to our webcast from the Quality Community Managed Care Project from the University of Illinois at Chicago School of Public Health. I'm Faye Eldar, your moderator. I'm the Family Coordinator of the Quality Community Managed Care Project and I'm happy to be with you today. This is another webcast in our ongoing series in the Special Kids and Managed Care Project.

Today's webcast is about special needs adoption and family health insurance. We are very pleased to have with us today someone who is a national expert on this topic, Susan Badeau from Philadelphia, Pennsylvania. Susan is a policy consultant with Casey Family Programs. She is the adoptive parent of 18 children who have special needs and she's very involved in parenting her own family and in policy issues for children who are adopted and enter foster care on the national level.

Sue: Hi

Faye: Hi Sue. We're really glad that you could be with us today.

Sue: Well I'm delighted to be here. This is my favorite topic to talk about.

Faye: Well, we're really glad that you found time. We know that you are extremely busy. First of all, we'd like you to tell us a little bit about your family and your experience with special needs adoption.

Sue: Okay. Well my husband and I actually decided to adopt about 23 years ago, and at that time we knew we were able to have children, and so we wanted to adopt children that might not otherwise get a home, and so we began looking into the area of special needs adoption, even though we didn't know that that's what it was officially called, at that time. We just said that we wanted a child that would be harder to place or the least likely to find a family.

And as we began to investigate what that meant, we learned that it included a variety of children, older children that are not infants and particularly children that are school age or teenage as well as children of different ethnic backgrounds and races as well as children that are siblings that need to be placed together and as well as children that might have medical or mental health or emotional or physical special needs. And so we started on our journey way back then, and our first child that we adopted joined our family in 1981. And that was after we had already had a child by birth and he was a two and a half year old. He just recently graduated from college.

So since then, we've increased our family as you mentioned, and we had two children born to us and we adopted 20 altogether. So our family is actually 22 children, one of whom has passed away in the past year, because we did adopt a couple of children with terminal illnesses. And so over the years as we've built our family and adopted all of our kids, we also have gotten more involved in the advocacy efforts and then the post-adoption services for families and support groups, and we've sort of grown and evolved in our own professional interests to match the needs of our family, as well. So we've seen adoption grow over the years and we've seen ourselves grow and we've seen the resources grow as well.

We also had one other experience where one of our daughters had a child born to her when she was a teenager. And she decided to place that child for adoption. So we've been on the birth family side of an adoption as well, and that's really helped us sort of see the whole process from a different set of eyes.

Faye: Well this is very impressive, Sue, and I appreciate your willingness to share the information. First of all, I'd like to ask you for some definitions. We hear about these terms and we are not all completely sure what they mean. What is foster care? What is adoption? What is guardianship? And what is special needs adoption?

Sue: I'm really glad you asked that because those are important things. Anytime a child is placed outside their home of their birth family that they were born into, then it potentially is a form of foster care. And there are different forms of foster care. If a family makes a private plan, perhaps with their church or a private non-profit agency to have temporary care of their child while they're going through a difficult time, that might be private foster care.

If a child comes into the custody of the state, the public system county system, then that could be because the child was abused or neglected or it could be because the parent voluntarily turned to the state for help. But in any case, that's then your public foster care system and that is intended to be temporary. It's intended to be a safe place for a child while issues get worked out so that the child can then return home to the birth family. Or where a determination can be made if the child can never return home, then another alternate permanent plan can be made for the child. And recent law has made it so that if a child is in foster care for 12 out of 15 months at any given point of time in their childhood, then a judge has to look at making a permanent plan for that child at a 12-month hearing. There there is a requirement that either the parental rights have to be terminated so the child can then move into an adoptive home or some other kind of permanent home or a definite plan for the child to return to their parents so that there's not this limbo.

An adoptive family is any family that makes a legal, permanent commitment to a child who wasn't born to them. So then you have private adoptions which can include infants placed voluntarily by their birth family. It can include older children. It can include children from other countries, international adoption. But when we talk about special needs adoption, those are children who typically are adopted through the foster care system but potentially could also come through a private agency. And these are children who are older, who have siblings, who are ethnic or racial minorities or who have a mental or physical or behavioral special need or disability. And so, whenever a family adopts a child that meets one of those criteria, that's where the term special needs adoption comes in. You mentioned two other terms; guardianship and kinship care.

Kinship care is when a relative, which is frequently a grandparent of a child, but could be another relative like an aunt or an uncle, takes over the care of that child. There are many many informal kinship care arrangements throughout the country where a grandparent, in many cases, steps in and raises their grandchild informally without the courts or the state involved.

But, if a child does come to the attention of the state and the courts because of abuse or neglect or other reasons, the state can also formally place a child with a relative. And so that would be a formal kinship care placement and in those situations, the relative, the kinship care provider should also get the same level of services and support from the state as any non-relative would get, as far as meeting the ongoing needs of the child.

And guardianship--every state has some sort of guardianship where a plan can be made for a child to be placed with someone other than the birth parent. And again, this potentially could be a relative. And it's considered a permanent plan, although there are times when, you know, the child eventually could go back to the birth family. It's not quite as legally binding as an adoption would be.

But many states are starting to explore what's known as subsidized guardianship, and it's allowing a child to be placed with a guardian and the guardian gets supports and resources to help raise that child. But they don't go through the same legal process as an adoption, and there's many reasons why that's sometimes preferable in a particular case. Again, if it's a relative providing the care or in some cultural settings in some Native-American tribes or example, it's not considered appropriate to terminate a birth parent's rights. So a guardianship might be an alternate way to get a permanent placement for that child.

Faye: I see. Now Sue, for children with special needs, are all children with special needs who are adopted considered to be special needs adoptions, and why or why not, and what makes the difference in this?

Sue: Well, that's a good question and I guess the answer would be no. They're not all considered special needs adoption in terms of the the government's definition of a special needs adoption and therefore what the government does to support that adoption. If for example, if you were pregnant and you learned that you were giving birth to a child with Down Syndrome or spina bifida or something that you were able to learn ahead of time, and you decided that you just didn't feel equipped to raise this child and you went to your local private agency, like Catholic Charities for example, and made a voluntary placement plan for your infant, of course that child, when it's born has special needs. But in the sort of governmental definition of a special needs adoption, that adoption wouldn't count as a special needs adoption because that child never entered the public system. Never became eligible for certain types of supports that the public system provides. And also there was never a court determination that the parent was unfit, or that it would definitely be in the best interest of the child to remove the child from the home. And so, because of those distinctions, even though the new adoptive family would clearly be raising a child who had special needs, it wouldn't be referred to in terms of government definition as a special needs adoption.

Faye: I see. How many children in the United States are in special needs adoptions?

Sue: Well that's a good question. There's over 600,000 children in the foster care system on any given day. And the most recent data we have shows that about 118,000 of those children right now have a case plan that calls for adoption and many of those children will become adopted. When the legal steps have been taken, many of them, perhaps as many as 80 percent, will actually be adopted by the foster families or the families that they are currently living with. So that leads the remaining perhaps 20 percent which, you know, would be anywhere between around 36,000 to 42,000 children right now, who would still be waiting and needing a permanent adoptive home and these children would be considered children with special needs adoptions.

Faye: And were these children primarily put up for adoption because they have special needs or is it because of abuse and neglect?

Sue: It's a quite a range. I would say that for the majority it's more of the abuse or neglect scenario. And perhaps some of the issues that led to the abuse or neglect, especially if the child, for example, was exposed prenatally to drugs or alcohol or abuse that cause injuries that lead to permanent damage such as shaken baby syndrome, or abuse that just created significant or emotional or trauma, neglect that affects nutrition which then affects medical health and perhaps permanent damage in some areas.

So, most of the reason that children in the foster care system are considered special needs is the result of the experience of either being abused or neglected, and then the multiple moves that they may have had in the foster care system. They may have missed a fair amount of school or jumped around from school to school so they could have educational special needs. Less frequently is because it's a voluntary plan that the birth family made because the child was born with a with a disability or some other kind of special need. That happens, but that's probably less frequent. I can't give you anymore clearer answer because the data isn't that clear. There's been a tremendous effort in the last few years to improve the data, but it's not there yet.

Faye: Is special needs adoption defined by state or by federal laws?

Sue: Well, it's a mixture of both. There are some federal laws that define or impact the definition of special needs adoption. For example, there is a subsidy program that allows families who adopt some children with special needs to receive a subsidy which the federal government helps pay for. And in order to receive that, the federal subsidy, the child has to meet certain federal guidelines or definitions of what is a child with special needs. And not all of that relates to the child. Some of it relates to the income of the family, the birth family, the family of origin that the child came from had to meet certain income guidelines for the child to be eligible for this adoption subsidy.

Most adoption law and most regulations impacting adoption, however, are state laws and regulations. So, while there are some federal laws and programs that impact- and especially the subsidy being significant-and a recent law called the Adoption and Safe Families Act that passed in 1997, has a number of guidelines requirements legally in federal law that states must follow regarding terminating the rights of children in foster care, moving them on towards adoption and that sort of thing. But as far as the day-to-day way the services are conducted, the way they're performed in a state, the exact services that a family would receive once they adopt a child, those are state laws and state regulations.

Faye: Now, what are the most common types of disabilities among children who are covered by special needs adoption?

Sue: As I said, the data isn't really great at the moment as far as really breaking down that kind of information. So I can't give you an accurate reflection of data, but I can tell you in broad terms what the data shows, as well, as experientially what I have seen over a 20-plus year history, and particularly in the current climate of what's going on right now.

The most common type of special needs would fall in the areas of what we refer to as mental health, behavioral health and also learning and educational disability. So we're going to see a lot of children who either had fetal alcohol or drug exposure or children who had a lot of early life neglect or abuse. And the impact on them is that they may have learning disabilities, they may have developmental delays, they may have significant trauma and therefore emotional and behavioral and mental health special needs. We see a lot of attention deficit disorder. We see attachment disorder issues. A huge percentage of the types and nature of disabilities are going to fall in that category. Then, however, you get the range of spectrum of the rest of other kinds of special needs. The least likely thing you're probably going to see is a lot of children, interestingly, with Down Syndrome, for example, in the public system because there's actually a waiting list of parents, adoptive parents, who want to raise children with Down Syndrome. So there's not a big waiting list as children with that particular disability waiting to be adopted. However, you are going to see children with other forms of mental retardation and developmental disabilities waiting in the in the system.

If you went on, there's one particular web site called Faces Of Adoption and it has pictures and descriptions of well over 2000 children right now that need permanent homes that are waiting right now today. And it lists the disability of each child. And so if you were to go on that web site and just literally browse through the children pictured, you'd see a whole range, and you'd see deafness. You'd see blindness. You'd see children who have Shaken Baby Syndrome and have multiple brain injury and you'd see cerebral palsy. You'd see rare disorders. I mean we've actually had adoptive parents looking at that site or looking at other information about children and see a child with a particularly rare disorder and specifically want that child because they had maybe a sibling that had that rare disorder and they're familiar with it.

Faye: Sue, that's very important information. We will have a link to this web site in the resource section on our web site so people can go and get more information. Now, a question about your own children. Were their special needs diagnosed before or after you adopted them and what types of disabilities do your own children have?

Sue: Well, that's a good question. For most of our children, some of their special needs were known before we adopted them, especially since many of our children were older children when we adopted them. And we adopted two children with a rare genetic disorder that's actually a terminal illness, called San Fillipo Syndrome. And that also involves multiple disabilities; profound mental retardation and a shortened life span. Clearly that diagnosis was known before we adopted these children. However, I should say that we adopted a child, for example, that was deaf when he was 13. By the time we adopted him, his deafness had been diagnosed. But it hadn't been diagnosed for a long time. He was nearly 10 by the time he was actually recognized as a child with deafness and being served appropriately in his foster care system in his state. So even something that may seem obvious like deafness doesn't always get picked up because children in foster care sometimes slip through the cracks of getting appropriate evaluation and getting appropriate care. We have a child who was diagnosed before we adopted him with cerebral palsy. But as he became a teenager, it became apparent that he had other special needs as well, more in the mental health area that nobody knew about when he was a young child and we adopted him. We did adopt a child with Shaken Baby Syndrome and most of his special needs were known before we adopted him. Many of our children like I said fit the broad category that have mental health and school-related disabilities; developmental delays and/or learning disabilities of varying severity. And some of that was known before we adopted them and some of that was not. We also have a child who's blind and we have quite a range in our family.

Faye: Well that's very complicated and I know it's a lot of work on the part of you and your husband to keep up with everything with school and medical care and social services. Do any of your children receive any government benefits related to their special needs adoption status?

Sue: Yes. When you adopt a child with special needs out of the foster care system, many of these children, in fact, typically most of them would be eligible for what's called an adoption subsidy. And one of the other web sites that will be available through this resource is a specific organization that has a whole range of the information about the subsidies state-by-state, because they do vary from state to state. But approximately half of our children that we adopted were eligible for adoption subsidies which means that we get medical support for them. We get Medicaid for their medical needs and we also get SSI which then helps meet their other kinds of needs that are not covered under Medicaid.

Faye: Now in general, Sue, how do children with special needs who become adopted receive their health insurance? Are their families required to put them on the family insurance policy?

Sue: Again, this is going to vary somewhat from state to state. Children who are in foster care should be receiving Medicaid and that Medicaid should transfer to the adoptive family. There begin to be some complications when a child moves from one state to another, if the child was in foster care in one state and then is adopted in another state. But there's an organization called the Interstate Compact On Adoption and Medical Assistance, and we'll be providing that information as well, how to reach them that have the state-by-state information about that. But typically these children should be eligible for Medicaid and should have Medicaid and it should transfer even from one state to the next.

Some states, and particularly if you adopt through a private agency, may also require that the child is put on the family's private insurance, if they have private insurance. And then the Medicaid would serve as a wrap-around or backup, for a secondary insurance, which is important because there are many types of services that Medicaid does provide through EPSDT that your private insurance might not. And so it's valuable to have both if that's a possibility.

Faye: What is EPSDT, Sue?

Sue: That is the program through Medicaid, which stands for Early Periodic Diagnosis Treatment and

Faye: Screening.

Sue: I'm doing them in the wrong order. EPS, Screening Diagnosis and Treatment. I'm sorry. It's a program through Medicaid where children have to be screened on a periodic basis for a whole range of possible disabilities and then if they are diagnosed, they must receive treatment for them, and their Medicaid must cover it even if it's not a typical Medicaid service. And so because of that, the Medicaid package of services for children with special needs is very good. And this would be true, whether the child is adopted or not adopted. So it's important for families, when they do adopt children with special needs to recognize that they should be able to be eligible for Medicaid, and that even if they have private insurance, they should still try to go ahead and obtain the Medicaid that they're eligible for, because it often will provide things that their private insurance will not.

Faye: Now, what happens if the family puts the child on their family health insurance plan, but their insurance refuses to cover these special needs, saying that they are a pre-existing condition?

Sue: Well, first of all, most states have some laws and regulations about that and that shouldn't occur. Actually, if it's a plan that would cover a child born to a family, if it is a family plan, then it would cover a child, then they must cover the adopted child in the same way and they cannot be discriminatory based on pre-existing conditions. So one thing to do, again, would be to check with these resources.

This Interstate Compact On Adoption and Medical Assistance has a member in nearly every state that could help a family sort through the individual state regulations on this. But they can also check with their Consumer Protection Bureaus or their insurance commission. But in addition to that, they should, as I said, try to pursue: getting the Medicaid to which the child is eligible because if there is any gap that the private insurance won't cover, many times the Medicaid will.

Faye: And what happens in the circumstance when a child is adopted and the family puts them on their insurance and then the child is diagnosed with some significant special needs?

Sue: For any child who has any adoption subsidy at all, it can be revisited and reviewed every year, or more frequently as needed. And that's where the National Adoption Assistance Training Resource and Information Network hot line, which we will also provide, will have this kind of information. But that's where they revisit and review the subsidy agreement, then any new diagnosis or new update on the child's condition can be incorporated into the agreement. And so, that's why we recommend to families when they're adopting a child, even if they don't think they're going to need a subsidy when they first adopt a child, that they try to go ahead and negotiate one, even if it's what we call a no-cash subsidy even if they're not actually getting any money but they have an agreement and it's open. So therefore, if anything does arise in the future, they can revise it to include the new information.

Faye: Now Sue, you have referred to a number of different organizations and resources. It sounds extremely complicated. Is all this information automatically given to the parents who are in the process of adopting so they know who to call or is a case worker assigned to every family who adopts a child to help them with all of this? How does that work?

Sue: Well, I would like to just be able to say yes, absolutely. It's automatically given. Unfortunately, that's not always true. Yes, a caseworker is assigned to every family. But again it's going to very from state to state in terms of the level of knowledge even that that case worker has about these services because they are complicated. They're not all offered through one system. There's the child welfare system and then there's Medicaid which comes through a whole different system. Mental health services often come from different systems. And you've got special education. And often your caseworkers that are working in this field are, many times, young recent graduates from college who all of a sudden are handed a caseload of 30 or 40 or more cases. They don't always have all this knowledge. So families really do have to be pro active and be advocates and at least know one or two of the types of organizations. I suggest that if you know even one of those, to call. They'll usually be able to refer you to the others if they are not the right one for your particular situation.

Faye: Now, another question. Is the parents' income counted and can adopted children with special needs be entitled to be on Medicaid, or can they be in the State Children's Health Insurance [SCHIP] program?

Sue: Well, they should be--if they if they qualify for special needs adoption and what's called Title IV-E Eligibility, and you know families need to know what these things mean. But they need to know, to maybe ask the question, is this child Title IV-E Eligible? And that's a complicated formula. Like I said, it has to do with the child's birth parents' income, as well as the child's special need. But anyway, if the child meets those criteria--then the family's income is not to be counted against them, in terms of getting Medicaid for the child. Now, if it's a child who does not qualify for that federal program, and is now going to file under a state program, then it may be that the state will serve that child through their SCHIP program, their Childrens Health Insurance Program or other program. They might develop a special program for these particular children. They have a number of options. But in many cases, the family's income should not count against them, although again for the half of the children, approximately half of all the children adopted out of foster care, they will qualify for IV-E and they will get the federal support and it will not be dependent on the adoptive parents' income. For the other half of the children, I can't give an across-the-board answer to that, because it's going to be a state-by-state determination.

Faye: I see. Now, back again to your own children. How do they receive their health insurance? Are they on your family insurance? Do they get Medicaid and how did you make your decisions about this?

Sue: Well, all of our children, all of our children are on our family insurance. Because we have family insurance, we have put all of them on. And so the way Medicaid works, even those who receive Medicaid, you know first, our personal insurance is billed and then Medicaid is the backup or the wrap-around. And we have made that decision, because we do have a family insurance and we do have some of our children who don't have any other options, and that's the only way to get insurance for them.

All of our children who do receive the adoption subsidies also have Medicaid and because we knew they were eligible for Medicaid, we pursued it for them because of the reasons I said before, that we knew it would be a better package of services for them and we knew it would fill the gaps that our private insurance would not cover.

Particularly in areas like different therapies, physical therapy, occupational therapy, dental care, eye glasses, ome of the prescription drugs, wheelchairs and other, diapers and nutritional supplements. Some of our children need some of those things that our private insurance would not cover. And so, without the Medicaid, we'd be stuck.

Faye: Now Sue, does your insurer charge you more money for your monthly insurance premiums because you have such a large family?

Sue: Yes, we have to pay the difference, the family portion of the bill. But we don't pay more than a family of two children would pay. I mean we pay the family part of the cost, and not necessarily, it's not a per child basis.

Faye: Well, that's good.

Sue: Yes, definitely.

Faye: Now, another question. Can adopted children with special needs be covered by the Title V Children With Special Health Care Needs program in the state where they live?

Sue: Absolutely and I'm really glad you brought that up, because one of the most important messages we could get out on this broadcast would be that children who are adopted with special needs, or in foster care, for that matter, they may be entitled to certain particular programs because of their status as beinqag adopted or in foster care. But beyond that, they're also entitled to every single other program that is in this country and any state or any community that's designed for children with special needs, as long as they meet the criteria of that program. But they should at least explore it. So, the Title V programs are an excellent example. Many adopted children with special needs will be eligible for this Title V program, but because they came into their families through a social service system, rather than to being born at the hospital to a family, they may not have been told that.

They may not have been referred to that because the social service system itself is not familiar with the Health Department and the Title V program. So it's really important for families to know this, to know to explore Title V, to explore everything that's available through your educational system and your schools, mental health system and behavioral health and all of those other kinds of services. Perhaps voc rehab, when you get vocational rehabilitation, when you get to that, you know when your child starts to be a teenager. Not to limit yourself as a family over the services that come down through the social service system, but to really explore these other systems as well.

Faye: We have links on our web site where families can get state specific information for all these agencies we're mentioning in their own state. Now, can children who were born in a foreign country and adopted in the United States also qualify for these state programs?

Sue: Yes. Now it's interesting. Children who are born in another country are typically not eligible for the adoption subsidy program I told you about, even if they meet other criteria for special needs, even if they were older or siblings or have a disability.

However, once they are adopted legally by a U.S. family, they are eligible for any other service as if they had been born into that family. So again, Title V programs, special education programs and other programs at the community, state or federal level, these children qualify as if they were born into the family. There should be no distinction and if anyone tells the family that there is, that's an error. They need to advocate, to push beyond that, because that's absolutely true that the children qualify as if they were born into the family for any service that's out there.

Faye: Isn't there also a new law that the children acquire U.S. citizenship now at the time that they are adopted?

Sue: That's right. It streamlines the process and makes it virtually automatic that once the family adopts the child, their citizenship is automatic and it's not dependent on the family going through a naturalization process for the child.

Faye: Well, that's helpful to lots of families.

Sue: Absolutely.

Faye: Can adopted children with special needs participate in Medicaid waiver programs that their state may have?

Sue: Yes. Again it's if the child has a type of special need that the state has a waiver program for, then that child is on equal footing with any other child in that state who would meet that criteria and have equal opportunity to be eligible for that.

Faye: Sue, we hear nowadays a lot about transition for youth and children who have special health care needs. What happens when adopted children with special needs turn 18 years old, or they become too old to be covered by their family's health insurance policy?

Sue: It's a tough situation, and it's tough enough for kids who are adopted. It's even more tough for the kids who never got adopted and remain in foster care. It's an isSue: that policy-wise a lot of us have been looking at and some recent legislation called the Foster Care Independence Act has begun to address. And part of what that Act says is that states can find ways, there's a state option providing continuing Medicaid coverage for children aging out, as the phrase is used, out of foster care up to the age of 21. And there's other services in addition to the Medicaid that that can also be provided. I can't say must.

Again it's an optional package, but there is, every state does have an independent living specialist for young people who have been in foster care. There's a couple of national resources and programs that have a variety of resources and information particularly about young people in this transition stage, who either are or ever were in foster care. And so again, there's resources that a family can look into to try to make sure that their child's needs are being met.

Faye: Are there any differences in the insurance coverage options for children who are in permanent guardianship, who remain in foster care or who are in kinship care?

Sue: In many cases, that's going to be a state-by-state determination. And part of it is what the state's Medicaid plan looks like and their agreements with the federal government in terms of eligibility criteria. But there are could be differences in some places. And we've have been looking at states for example, that offer subsidized guardianship and they vary in how they approach this, what we might call categorical eligibility for Medicaid. However, I will say that most states are moving in the direction of trying to be sure that regardless of the type of placement the child is in, that they would, in fact, be eligible for the Medicaid coverage.

Faye: Now, a related question. Something I've heard from a number of families. Are grandparents allowed to put grandchildren on the family insurance plan?

Sue: Well, excellent question and another one that varies from state to state. But it's come to the attention of legislators and policy makers. But this is an issue that more and more children are actually living with grandparents and therefore, need the opportunity to be enrolled in school and receive health care with the grandparents as the guardian. And so it's often therefore, necessary for the grandparents to actually get a legal guardianship or legal custody of the child. It's when their children are in the informal type of kinship care arrangements that a family is more likely to run into trouble with those issues because they don't have a legal piece of paper that the insurance company or the school can use to justify giving them services. So it's often helpful for grandparents to pursue: getting some sort of legal status with the child. Often that would be guardianship.

Faye: And we will also have some resource links for grandparents on the web site connected to this webcast.

Sue: Great.

Faye: Now are there any special resources for children who have very serious medical conditions such as having AIDS or being medically fragile?

Sue: There are. There's the same kinds of resources that would be available for those children, whether they were born into a family or adopted. There's not too many that are especially for an adopted child with AIDS per se or something like that. But agencies who place children with that level of special need would be more likely to be familiar with the other kinds of programs that particularly the medically fragile kinds of services. Often those will be necessitate a link with the Title V program in the state.

Also there's a number of support groups and there's a one of the web sites that we'll be making available is called Adoptionet. And Adoptionet provides online chats and on-line education and also listings of support groups for adoptive families. And there's many support groups that are very targeted for families adopting children with a particular type of special need or medically fragile or fetal alcohol exposed, for example.

Faye: Do you think that most adoptive families get involved with these kind of support groups?

Sue: Many do. Many do and the North American Council On Adoptable Children keeps track of support groups around the country and also requests that families who call in on their 1-800 number or e-mail in on their web side looking for support groups and it's clear that that's something that families really look for and seek out and rely on. Particularly nowadays sorts of support groups available on line as I mentioned. Families who have difficulty getting out to attend a meeting or getting even transportation or child care for their child with special needs so that they can go to a meeting. Now they can do some of these things in their own home and do it right on line so I think that they can also find families who have a child with the same type of special need as their child, even if they live in a small town or a rural area where there might not be a family right there in town, but again, there might be a family on line. So I think this is opening up many more support opportunities for families.

Faye: Well, you're really right about that, Sue. I think we can all identify with the issue of not being able to get out or having children who don't sleep so parents are up in the middle of the night and it's quite revolutionary to have the home computer available so you have access to the outside world even if you cannot physically be there.

Sue: That's right.

Faye: Now, what about a family who wants to adopt a child who has special health care needs? What resource do you recommend for them?

Sue: Well, I strongly recommend that that the first thing that they do is really explore and learn. And so some of the organizations that I've named, that we will have on the web site, is the National Adoption Center which runs The Faces Of Adoption and the Adopnet sites. The National Adoption Information Clearing House is an excellent resource that has all kinds of resources. And those would be a couple of first steps to get information about how do you adopt? You can call their 1-800 number or e-mail either of those organizations and start to get a packet of information that tells you what is the process, what do you need to know. You can take classes either locally in your state or again online. So the first step is really to become educated.

If people are interested in adopting a child with special needs, I strongly recommend that they really go through an agency who has experience with that type of adoption. Because some families are just so eager to adopt, particularly if they they see a television show. Maybe they listened to a broadcast like this or something catches their eye. There's posters in Wendy's restaurants with pictures of children waiting to be adopted. There's a number of places where someone might see a particular child or get excited about adoption and that's fantastic. That's what we want to happen. But they're so enthusiastic and they want to adopt right now today and so they call around and they find the agency that can give them the quickest home study cause the home study is your first step in the process.

The quickest one may not be the one that really has the experience with special needs adoption and they're going to need that experience later in the post-adoption period. So you really need to explore that and not just who can serve you quickest, or else the least expensively because sometimes if you get your least expensive home study, it might be less money that you're putting out up front, but again, you might not get the services later. Whereas, even if you go to an agency where you have to pay a little bit for your home study, usually through these other programs I've talked about including one called the non-recurring expense reimbursement or the adoption tax credit. You can usually get either reimbursed or credited for the money that you've put out for the home study. So again it's better to find an agency that really has the experience and has especially the post-adoption services component in place so that you can get support groups, respite care, counseling, and information and referral, about all these other programs we've been talking about today. You want an agency that's tapped in and knows how to help you that way. and that's more important than getting through it fast or getting through it with the least expensive model.

Faye: Now Sue, since you're talking about costs, I know there's always a lot of media attention about families who are spending very large sums of money to adopt children. When you talk about a reasonable cost for a home study, could you give us a ballpark figure of what you're referring to?

Sue: Sure. It's really going to vary again by state and community. So I wouldn't want anything I said to be taken as something that's etched in granite. And there is a booklet called Making Adoption Affordable that is available through many of these agencies that I've mentioned. The National Adoption Information Clearing House would have it and so would the National Adoption Center. And it goes through this in greater detail. But essentially I've heard of ranges anywhere from about 500 to 600 dollars up to about 2500 for the home study. If you hear something outside of that range, it could be a red flag to be concerned that it's too high, if it goes beyond that.

Faye: Well, I appreciate your sharing that with us, cause as I said, there has been media attention when there are problems with adoption and families have paid exorbitant amounts of money.

Sue: Right. Now the home study may not be the only cost a family would incur, but it's the first cost. When you're adopting a child with special needs, you really should, it's possible to do it without incurring any costs that are directly related to the adoption. If you work totally through your public agency and you're going to adopt a child out of the public foster care system, it's possible to get a home study that you don't have to pay anything for out of pocket and they will also do the legal they will provide the lawyer that does the legal services for the adoption as well. So, your only out-of-pocket costs might be things like your own transportation to get to and from the agency office or your own cost to go get a medical exam for yourself because that's required of home study.

Faye: I see.

Sue: So you might have very minimal actual out-of-pocket costs. So, people need to know that you don't have to be wealthy. You don't need to have a lot of money to adopt a child with special needs. There are ways to do it, where not only do you not have to put out a lot of out-of-pocket, but you also can get the subsidy and the support to raise a child.

And if you do put out money, if you go to a private agency and get the home study, but you do end up adopting a child with special needs, there are programs where you can eventually get reimbursed for that as well. So, the cost factor is very different than it would be if you're trying to adopt a healthy infant or a child from another country where the fees are going to be much higher and where there are virtually no programs to reimburse you for those fees. You know with special needs it doesn't have to be like that and families should be aware of that.

Faye: Well I'm really glad that you were able to clarify that for us.

It's time for us to wrap up and I just have a couple of questions left for you, Sue. One of them is, who can help adoptive families of children with special health care needs if they are having problems accessing needed medical care for their child?

Sue: I think the two most valuable resources really are the the one that's referred to as ICOAAMA, which stands for the Interstate Compact on Adoption and Medical Assistance and nearly every state belongs to this compact and has a person identified in their state that handles these queries and is supposed to be responsive to families about these issues. The other would be through an organization called NACAC, which stands for the North American Council on Adoptable Children. They have a particular project called the National Adoption Assistance Training Resource and Information Network. And they again have state-by-state breakdowns of what the resources are and how to access them in every state.

Faye: Well that's wonderful. We'll have a link for these organizations.

Sue: Right.

Faye: The final question, Sue, is what advice do you have for other adoptive parents of children with special needs about insurance coverage and access to health care?

Sue: I guess my main advice is don't take no for an answer or don't accept that if you hear "well that's not covered, or that's not possible or that can't be done." Don't to believe that, but to really explore this through these other resources what your child could be eligible for. Many times you're going to be told no, because we have to remember that children adopted with special needs are very small percentage of the total number of children that a Medicaid agency deals with. So, they may not be familiar with our kids and they may not understand and they may mistakenly tell us that something is not available when, in fact, it is or it could be.

So my main advice is to really learn advocacy skills and be your child's advocate and get involved with organizations within adoption, but also outside of adoption, like Family Voices, an organization that is for families who have children with special health care needs. Some of them are adoptive parents and many of them are not. But they have a wealth of knowledge about the resources available, so they can broaden your view of where to look for support.

Faye: Well, I appreciate your sharing all this information. Since you and I know each other from our involvement in Family Voices, we are aware that there are lots of resources and support available to parents nowadays. And we have new electronic resources fortunately that more and more families are able to access.

Well, Sue, you really have a great amount of expertise and dedication and knowledge. I want to thank you very much for being with us today and sharing some experiences from your own family and from your work as an adoption professional.

Sue: Thank you. I enjoyed it and I hope it helps.

Faye: It definitely will help and we're glad that you could join us.

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End of interview.

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