How Can I Get My Child into Residential Placement?
© 2002 Teresa Kellerman
Q: Can you explain how to get your kid into residential, like how to find one, choose one and how to pay for it? Your daughter Karie's placement sounds amazing, and I don't know how to find something like that. I think your experience would help some of us.
A: That's a good question, but a tough one. Getting Karie into residential placement was possible because she qualifies for DD services (for developmental disabilities), and I had spent a great deal of time educating the state people about the seriousness of her disability (Prader-Willi Syndrome is similar in many ways to FAS). It is more medically based and imminently life-threatening, so it was easier to justify placement for Karie than it would be for a child with FAS.
The hard thing about giving this kind of advice is that there is such a wide range of function and ability with FASD, and there are so many other conditions that might occur and impact the course of action that would be successful for any one child.
In spite of my ability to educate the agency staff about her disability, there were still many serious problems. From age 15 to 21, she was in about 10 different placements, and none of the moves were because she got kicked out due to behavior problems. All were due to abuse or neglect by roommates and even by the staff, or because the agency was not capable of providing close supervision to keep her safe. Injuries Karie has sustained include a broken tailbone, hair pulled out, face gouged, nose broken, 2nd degree burns from boiling water, fractured wrist, among others. She has been in a car accident, been hit by a car while crossing the street, and was raped by a day program resident. She is now in a decent home placement, for 4 years now, with good staff and committed house manager. It's partly luck that we live in Tucson and happen to have this wonderful agency that is so committed to providing quality care, And it is partly due to 15 years of my raising awareness about her disability.
I don't have a lot of trust in group homes, and I am not in any hurry to get John placed in one just yet. Group homes cannot provide the loving care that parents can - the staff turnover is too high. But parents cannot provide the 24/7 that the teen with FASD requires. Karie and her roommate have 6 full-time staff individuals who trade shifts, sometimes with 1:1 care. Add the house manager, administrative staff, case worker, community nurse, and you have about 4 people working full time doing what I did on my own when she was still at home. That does not include day program staff, which brings the figure to 5 people caring for one person. No wonder I was stressed out and exhausted caring for her and John day after day.
Unfortunately, only about 25% of kids with FASD qualify for DD services, so most of them can't get residential placement unless they qualify for mental health services, and those placements are not always appropriate for our kids. The agency that provides staff for Karie has a few group homes with kids who are FAS. The director really gets FASD, and has me train staff regularly. But he has a really hard time with the line staff because the kids appear to be more capable and functional than they really are. This agency is very unusual in their commitment and willingness to have their staff trained. Most agencies don't care or are not interested or just don't take FASD seriously.
So here's what I would suggest to parents who believe a residential placement is in their child's best interests, or is necessary to preserve the health and/or safety of the family:
1) Get assessments done and get copies of all reports and detailed results from all testing. The recommended IQ test is the Woodcock-Johnson, as it has lots of subtests in the area of information processing, and shows the highs and lows that are behind the "normal" overall score. The Bender is helpful as it shows typical visual-motor deficits. A functional assessment is crucial, such as the Vineland Adaptive Behavior Scales, which will show a score well below the IQ and will explain the child's inability to function independently. A good psychological evaluation will bring to light any mental health disorders, such as Impulse Control Disorder, Attention Deficit Hyperactive Disorder, Obsessive-Compulsive Disorder, attachment disorder, autistic symptoms, tourette symptoms, or any of the conduct disorders that might occur. Let the doctors and evaluators know that you are not afraid of having any of these diagnoses in an official report, and that their honest reporting of their findings could be beneficial in getting needed services, especially if the IQ is above 70.
2) Document behaviors that indicate the need for 24/7. Recall and write about risky behaviors and repeated mistakes. Record all unusual incidents as they occur. Keep a journal, like the ABC journal: A = Antecedent (what happened immediately before). B = Behavior (what the child did that was risky, illegal, harmful or inappropriate). C = Consequence (everything that happened as a result). Write down these three components and make a note
of how the situation was resolved, and any factors that might affect the behavior.
3) Keep copies of all records from school. Special education placement and IEP records will be helpful in proving the need for support services.
4) Join local groups such as The Arc, the local council on developmental disabilities, NAMI support group, parent-to-parent group, etc. The best way to learn how to navigate the system is to hang around with other parents who have experience. They will tell you more than any social worker about how to get what your child needs.
5) Contact either the local division of developmental disabilities or mental health services agency, whichever is more appropriate for meeting the child's needs. Request an evaluation. Do not allow them to turn you down over the phone. Get an appointment and bring all your records with you. If you are turned down, initiate an appeal. Learn ahead of time how to do this in a timely manner. Make all requests in writing and request a reply in a certain amount of time, 10 days or 30 days. Address it with cc to your local disability legal advocacy office (Protection & Advocacy. there's one in every state). It would be a good idea to have previous contact with this office so you can say you have spoken to Ms. So-and-so from their office. This lets folks know that you are aware of disability law and know how to enforce your child's rights.
Criteria for services vary from state to state. Half the states are like Arizona, and require an IQ under 70 to get DD services. Other states follow federal criteria and look only at functional abilities. Residential placement that is mandated through DD or Mental Health services are usually funded by tax dollars. Sometimes the child can qualify for SSI even before turning 18. This is federal law, but again, how the eligibility criteria are determined might be different from state to state. It is best to learn about this from other parents in your state. The arrangements are usually made through the case manager for either the DD or MH system.
The child most likely to need a residential placement is the child with FAE and RAD (reactive attachment disorder). The family will probably be told that there are no residential services available. The child is likely to engage in risky behavior that could be harmful to family members or others. Eventually the child will do something serious enough to be arrested, and a judge may require parents to provide close supervision with house arrest. This is impossible unless there is someone available to follow the child around constantly. If and when a child is arrested, the lawyer appointed for the child should be educated about FASD and should request a full psychological evaluation to determine functional ability and to assist the judge in making a wise decision about the child's future. There are some good articles on my web site that will be useful for education personnel in the court system . Sometimes getting in trouble with the law is a good thing, if it means getting assessments and reasonable treatment programs in place.
If your child does not qualify for DD services and does not have a mental health diagnosis, then start making waves in your state. Contact your department of DD services and find out what the legal policy is on qualifying criteria. Then contact your state representatives and make appointments to meet in person. Take with you the following two documents:
- Personal story about your child's life and the problems encountered as a result of having FASD and not being able to get needed services. Make this concise - one page if possible. Include a photo. I helped John to write a letter to the president a few years ago.
- Fact sheet about FAS. Put together pertinent facts from the Facts Sheet on my web page, and add a few statistics about FAS in your state, which you can calculate using the FAS Cost and Incidence Calculator linked on my website - just plug in your state's population and number of
births per year.
Legislators listen to parents. A combination of personal story plus hard facts will make a difference. No one else will testify on our behalf, and if they do it won't be effective. I hate politics, but this is the only way to get the laws changed. It is families like yours that motivated me to testify at the Michigan Town Hall Meeting on behalf of the kids who do not qualify for services. Find other parents in your state who might be willing to do the same thing. There is power in numbers, especially among constituents.
The key is education of all involved persons about FASD. Most professionals will not take the parent seriously, even though they are the expert when it comes to their own child. Bringing in an outside expert is often the best solution. One training or workshop could educate one hundred professionals. My own 6-hour seminar has been quite helpful to families and agencies all over the country. If anyone is interested, I'd be happy to come out and put on my "Looking Up the River" PowerPoint presentation. It's pretty cool. Arrangements can be made through Fasstar Enterprises .