Monday, April 6, 2015

Why I placed my disabled child in a group home


This guest post is written by a mom, Dana Linett-Silber, I met soon after we found out that Max had a stroke. A mutual friend connected us; Dana's son, Jack, also had a stroke at birth. He was five years older than Max. Dana was a big source of comfort to me back then. Over the years, we've stayed in touch. And then, I found out she'd made a tremendous decision. This is her story.

There’s a neighbor in our building who will no longer acknowledge us. She used to be friendly, but now she won’t say hello or even make eye contact. Once she let the elevator door close in my face after I asked her nicely to hold it. Her hostility started in the summer of 2008, right around the time we sent our then 10-year-old son, Jack, to a group home.



I’m sure she’s not the only one who’s outraged that we “put him away.” But I don’t care — he’ll be 16-years-old soon and I have no regrets. In fact, there are not many things I’m certain of, but one thing I know for sure is that we did what was best for all of us, and that includes Jack.



Because he can’t talk or feed himself and is physically challenged, Jack needs assistance with every aspect of daily living. He is also unable or unwilling to drink, so he gets all his liquids through a feeding tube (figuring out the reason why, after the umpteenth ICU hospitalization for dehydration, stopped mattering).



When Jack lived at home, we depended on aides seven days a week and sometimes for overnight shifts. Some of the aides were nice to him, but not to me. Some were nice to me, but not so great with him. I was friendly with a few, others gave me the creeps. Dealing with them was difficult in all the ways that managing employees can be and more, but I was desperate to keep the rotation going. With two other kids and a job, I lived in fear that one day someone wouldn’t show up.



Sometimes there were fights between the aides and me over scheduling. One weekend, I suspected that two day aides were trying to sabotage the night aide by leaving their shifts without having properly cared for Jack, in hopes that the night aide would be overwhelmed and quit over his agitated, deficient state. Our home had become a dysfunctional workplace, with all the ugly cutthroat competitiveness and politics that go along with it.



I once received an anonymous multi-page letter in the mail from a neighborhood parent who had observed my son with his aide in the park and felt his care was “not as good as it could be.” Yet this particular aide was extremely punctual and reliable, and it seemed too risky to give that up. In fact, the thought of trying to get through even one day without help scared the hell out of me.



Sometimes I would feel bad that Jack was in his pajamas in bed at 6 o’clock when other boys his age were still active. But the aide had spent hours feeding and bathing him and was exhausted and ready to go home. And I was tired, too.



I know of a family who can’t bring themselves to place their autistic 22-year-old son in a group home. He lives in a big house with his parents, attending a day program and languishing alone in the backyard, swinging on a swing or ripping up leaves. I heard his mother adds vodka to her morning orange juice and doesn’t stop drinking till bedtime.



Now Jack lives in a brownstone on a quiet block with a group of other boys his age. There are several counselors there who work as a team to provide for his basic needs. They’re young and strong and never seem tired. When Jack lived with us, his aides used to wheel him around in a big stroller. Now, his counselors prefer to hold his hand and walk with him everywhere, improving his strength and balance every day.



His home also has a nurse, social worker, den mother and manager. He is never alone, and neither are his caretakers. I never worry that his needs aren’t being met. In fact, I know his needs are being exceeded in ways they never could be when he lived with us. Whenever Jack is off from school, the team takes him and the other boys on a trip to an amusement park, concert or movie. Although we try to visit him every week, sometimes his schedule is too jam-packed to squeeze us in.



Twice a year we hire an aide and take him on a special family vacation so we can all be together and his brother and sister can bond with him. They were young when he lived at home and probably don’t remember much, but I know they’ll remember the good times we have with him now.



Granted, not all group homes may be as great as the one we found. But because Jack will never be able to live alone or care for himself, and we know that one day my husband and I will be old—and, eventually, dead—putting him in one was simply inevitable.



It’s pretty much impossible to have complete peace of mind about your children’s futures but ironically I do have it with him. I’m so grateful he’ll be able to live where he is with his housemates for the rest of his life. And because we had this opportunity and made the decision early on, we all gained so much--Jack included.

Republished with permission from Elizabeth Street

43 comments:

  1. That must have been difficult. The hostility is completely uncalled for. These people don't live in your shoes, they don't know anything. And if that is still continuing after 6 years, well those people must not be very mature. I am glad that Jack and all of you are happy, that is what it boils down to.

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  2. I also place my now 18 year old son in a residential school at the age of 10. he had been kicked out of his private school and the local public schools were warehouses. He has flourished in a residential setting for many of the same reasons you have mentioned in your article. I visit him most weekends and his brother comes up about once every 6 weeks. He will have a much easier transition to adult placement because he has learned to excel in this setting. this makes me sleep more easily at night as age and he has now become bigger than I am.

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    1. How did you manage to get him into a place? My son is 12 and I cant find a place nor would i be able to pay for it even if i found it!

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  3. I have many things to say about this, being in a similar situation. But I am as yet unable to write them, even though it has been three years.

    For now, I feel your pain my friend!

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  4. Jack's happy and that's what's important.

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  5. If he could walk why was he in a wheelchair all day? He must miss his mother terribly. I hate to be so judgmental but this makes me so sad.

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    1. Life is not perfect and no one needs pity from anyone else. This author made the best choice for her son and her family and continues to make the best choices for her family. I am sad for people when no options exist and nothing is working, but this story gives me HOPE ! That great places exist and there are options.
      Thank you for sharing your story and how you and Your family make it work !

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    2. anonymous. if you don't have special needs children in your home, it is very difficult for you to understand what this mom goes through on a daily basis. I have had friends with children with various special needs. some have kept their children at home, some have placed their children in group homes. i have a special needs child who is a total care and one that has mild autism. i also have a boyfriend who has both physical and mental conditions that are worsening day by day. my boyfriend has been the reason that i have been able to work fulltime to support my family and keep my children at home. I have been through several nurses and aides that care for my physically impaired child. i am now at the point where I am exploring placing my son in a group home.Even with all of the help i get, I am struggling to maintain the best care for my sons and my boyfriend. so please take the time to offer your help to someone in this situation so that you may be able to view life through their eyes. it will change your mind and opinions greatly.

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  6. Thank you for writing. People judge so easily. My younger brother is severely autistic. My parents fought for several different placements for him in the schools but it was never enough. They couldn't give him what he needed, and he was miserable, and we were miserable. When he was 9 they sent him to a residential school for children with autism. It changed his life and enabled him to do things he never would have been able to otherwise...like tie his shoes, write, ride a bike. Yet there were people who refused to speak to my parents because of their choice. They refused to speak to them, maybe not knowing that he spent many days destroying things in our home and (I apologize for being graphic) playing with his own feces. They did not want that kind of life for him. Today he is an adult who lives in a group home and comes home for visits. He loves his time with us, but he loves his time in a structured environment just as much. Sometimes people just have no idea.

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    1. Deb, this is exactly my situation now with my 12 year old son. I'd really like to talk to you and/or your parents about how they managed this.

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  7. The only person I feel badly for is your neighbor. She must live in a very small world.

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  8. Thank you for sharing your perspective! I know it will help a lot of people.

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  9. No two kids are the same and especially no two disabled or ASD kids are the same either. my 25 year old daughter is high end severe autistic, non verbal and acutely unpredictable, I made peace with myself many years ago that, one day, I would not be able to continue to give her what she needs, my 22 year old son is also autistic, he is verbal with an amazing memory (for things that appeal to him) I actually dare to think that one day he will be able to live semi independently with background help. I will always make sure they both get what they need, if I am unable to provide this, then I will strive to make sure they receive the help to make their lives happy, they both need a person centered approach. I refuse to beat myself up, to their detriment! for the past 25 years I have put them both before myself, but I am not a martyr and when the time comes, I will 'retire' happy in the knowledge that I did everything I could. NO ONE HAS THE RIGHT TO JUDGE as no two parents walk in the same shoes !

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  10. We placed our sin Jorge in a group home when he was 13 due to his severe behavioral issues combined with being deaf/blind and cognitively a toddler. When he got to where he could walk, but had no orientation, he was a danger to Cindy and Nichole who were both multi-handicapped. We had no in-home help and my husband is quadriplegic, so it became a safety issue after he hurt me and Nichole (unintentionally). Placing Jorge in a group home was harder than the death of my first child as it wasn't the great place this mom had and was an hour away, but it was the best we could do. Years later, when he wound up in the hospital and we knew he was going to die, we brought him home and since he was no longer a risk to the girls, even though we had no help for him, I was able to care for him in his final months and many wounds healed. I will never think less of anyone who makes these tough decisions....

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  11. Wow. Just wow.

    My heart breaks for Dana and her son. Dana institutionalized her child rather than HORRORS deal with managing in-home staff to keep her son at home!

    The fact that Dana is PROUD of removing her son from the institution once or twice per year to "bond" with his siblings?! No words.

    I'm appalled that Dana has CHOSEN to teach her kids that "appropriate" care for a disabled sibling is NOT AT HOME and that spending one or two weeks a year with that same sibling is "enough".

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    1. Every family has to make their own decision based on their own circumstances. Dana loves Jack so much she was willing to make a difficult decision to give him the best care- that's huge.

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    2. Kate - That is over the top judgmental. I am very glad you are perfect and in a place to judge others.

      Sheesh.

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    3. How the hell do you know whas happening for her? If your going to critisise people in that passive agressive bitchy tone. Some kids require morr care than others. Its no diffrent than if a child was very ill you would take them to a hospital as treatment for that child would be the best thing. As for the home for Danas child is the best thing for them. Your in no potion to judge. For to judge you would need to have been through this and be perfect. It seems at the very least you are no where near the latter. (i dont know if my illness refence was rude. If it was i am very sorry. For i did not mean to be)

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  12. Thank you for writing this. My son will likely end up in residential care at some point. He has severe cognitive impairment and some aggressive behaviors which have hurt me quite a bit. It is a shame people see fit to judge something they have not experienced.

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  13. Thank you for sharing. That was very moving and beautifully written.

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  14. Kate, until you have experienced caring 24 hours a day for a child with profound disabilities, you cannot imagine the stress and pain. To judge Dana is to refuse to see the truth: she loves her son, her family and herself enough to have made this painful decision. I am proud of her, and I don't even know her.

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  15. I wonder if the author, or anyone else who has found residential placement, would be willing to share how they found such a place. My son, who is non-verbal and can be quite aggressive is only 8, and we hope he'll be able to live with us for a very long time. That said, we know that we won't be able to care for him forever, and I fear that if his aggression ever became so bad my daughter was in danger, we'd have to make some difficult decisions. I'd rather get ahead of it and know what was available, but I can't seem to find any place that takes kids with both severe cognitive and behavioral challenges.

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    1. start with your local welfare office. they can give you referrals for community agencies that can help with the waiver programs that will assist in paying for the community homes. then visit the community homes several times before deciding on placement

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  16. It gives me hope to hear that there are good places: I still care for my severely disabled 18 year old at home and I haven't even managed to find suitable respite! I can't understand how people can be so judgemental about the actions taken by this writer. It sounds like her son has a really good life now and her worries about his future are greatly reduced. Many other families would love to be in this position.

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  17. Nobody can imagine the task of caring for another human being 24/7 unless they've had to do it. Those that judge usually have absolutely no clue. The parent-child relationship is reduced to nurse-patient, and the sibling one to 'carer-in-waiting'. Each of us, in our own way, does what we believe is best for our special needs children, and for the rest of our family. I see hope in this womans' post, where no hope previously existed. Bravo for sharing.

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  18. This mom shared the following info on the group home her son is in: The home Jack is in is a community based home in Brooklyn, New York, that was created by a mother whose son was in Willowbrook, the infamous institution that Geraldo Rivera exposed to be a "snake pit." She is a very dynamic woman and she lobbied in Washington for funds to create small, community based homes for disabled children and adults. We are so lucky to have found out about her and her homes through my husband's aunt who lives in the same community. We put Jack on the list when he was a baby "just in case." When a spot came up we knew we should take it, that another one might not become available for some time. (There are no open spots right now). As it happens, after Jack got in, budgets were cut (I think state and federal but not sure) and unfortunately it is so difficult now to find a spot. I think they raised some money privately to accommodate some more people in their community that were on a waiting list. I know there are state lists you can get on but the quality of the homes unfortunately do vary and so much work is needed to create more quality residential settings. I feel like we won the lottery and would just advise people to google for information in their particular state and put your child on a list. You can always say no if a spot comes up but there must be some other good options out there. More advocacy and money is needed because even if caregivers commit as long as they possibly can, the time will come when someone who can't take care of themselves will need placement.

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  19. I recommend the book "standing up for james" by jane acra on this subject

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  20. Sorry the author is Jane RACA

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  21. Dana, thank you for sharing this. It sounds like you have made a good sound decision for your son and your family. It is sad that you face such backlash from your neighbors. Why do we have to judge people when we don't walk in their shoes. Hmmm?

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  22. A disabled adult growing old with his parents is tragic. It is vital to make your son's world as big as it can be! You made a wise and loving choice. Your neighbor is cruel and needs to find something to do with all her extra time.

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  23. Listen people, the bottom line is that this child was discarded because he is disabled. Help or no help, this "mother" was never going to raise this boy. Her decision to kick her son to the curb will permanently damage her and her so-called family members. Thanks to her, neither of them will feel worthy of unconditional love, overcome their abelist prejudices, or learn how to commit to the responsibilities they take on. Taking the easy way out of problems is usually a big mistake and, as this woman can attest, not one likely to go unnoticed by the community in which they live. As long as people continue to conceptualize a family as being a unit of people who share a home and build a life together, the costs of a person's decision to become a "run-away parent" are most likely going to include having to cope with being reminded of how selfish and cruel it is to your entire family unit when you toss away some of its members.

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    1. Seriously? I'm just going to go out on a limb here and assume you don't have a severely physically disabled child of your own to care for? As the parent of two speical needs children adopted from foster care....I can tell you in some situations placing a child in a group home is the BEST option for the child and the family. You are clueless!

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  24. I stumbled onto this blog while I was googling something for my work. I am a caregiver in a group home for adults with disabilities. There are six adult residents in this home, with various mental and physical disabilities. I just wanted anyone reading this, for whatever reason or decisions you are struggling with, to know that there are people working in these homes that love your child/sibling/loved one very much. This work is not high paying and can be as stressful as you would imagine, and there are many stories about sub-par care and possible abuses. But I have found it to be untrue. The people I work with are all so big-hearted and compassionate. I just wanted you to know that. We often discuss how difficult it would be to care for a special needs child 24/7 - none of us could do it, and we are professionals. We get to go home, and that's probably why we are able to do it. Anyway, I hope my comment brings relief or comfort to anyone facing a difficult decision.

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    1. Yes thank you im a mother of a 10 year old total care son but unfortunately i had brain surgery and since has been very challenging to care for him i really needed to hear this thank you

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    2. I work in residential disability too, and I can honestly say that even though the pay is not the best the job is wonderful and rewarding. I have seen parents who feel incredibly guilty about their child leaving home, but often we can give them the care that the parents are unable to. Not every person with a disability should live with their parents forever. Group home Living is not for every child, but very beneficial for some.

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  25. As usual, the hostile people who judged you for this didn't jump to volunteer to adopt your son. You have my sympathies, and my respect, for being brave enough to do what was best for everyone, your son included, in the face of such inevitable hostility.

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  26. As someone raised with a special needs child in the household I can say from experience that it is often best to institutionalize such children for the benefits of everyone else and ultimately the child who benefits from 24/7/365 specialized care. The relative's child raised along side me when I was young had severe behavioral problems and developmental delays leading him to constantly act out to the point of getting himself kicked out of nearly every public elementary school in the county and destroying the entire apartment if denied the simplest request like a cupcake before supper. My mother,who was his legal guardian and had started adoption proceedings,was actually advised by his therapists to get him OUT of our house, because love was nowhere near enough for a child as disturbed and impaired as he was. After 3 years of nearly no sleep,having to quit her well paying job and go on welfare, and being shunned by family and friends alike she finally gave in and placed him in a facility when he was 11 years old. I cannot tell you the peace and relief that swept over our household. My adopted brother himself was happy to be away. He enjoyed his new bucolic strictly regimented surroundings immensely with the constant attention his condition required.Sure the same people who once ostracized our family due to his problems shunned us even worse once he was sent away, but there are no regrets.

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  27. I struggle with this often. My son is 13 and though not physically disabled, his intellectual disabilities and behaviors are only making things worse as the years go by. He was 2 months premature and Im a single parent so Ive been dealing with everything from day one. Somedays I feel I might have a heart attack while my son is yelling, throwing things and not listening to me at all. My heart breaks at the thought of him being with out me and how do I entrust someone else to take care of him? But I know ultimately my health suffers and maybe someone can work with him to control his behaviors, nothing I have tried works.

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  28. Wow, I am pretty amazed by the harsh responses here. I have a kiddo with disabilities, and before she was born I actually ran a group home for adults with developmental disabilities!

    Most of my clients thrived in the group home. Not because there was some deficiency with the parents of these individuals, but because they went from a home where there were few hands to help, to a home where there were MANY hands to help! My clients were able to become more independent, make friendships, visit new places and some even got jobs or went to school. They were unable to do some of these things in their parents homes, just because the parents were too overwhelmed and had too few resources.

    I'm proud of the work I did there, and had good relationships with the parents who sent their children to us. I learned a lot from them, and it served me well when my own daughter was born with disabilities. I don't think we would ever need to put her in a group home, but I don't have any ill will towards parents who do. I get why they do it, and until you've been in their position I'm not sure you could really grasp the reality of their situation.

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  29. I really don't understand how anybody has the unmitigated gall to judge anyone when it comes to a situation like this. It's a heart wrenching decision to place your child in a home and then for anyone else to make you feel like a horrible parent for doing so is just so unbelievable to me. I have a sister who was severely brain damaged at birth, we had her at home until she was 16 years old. I was the baby in the family and I do not have fond memories of her. As she aged she became more aggressive, I was pushed down the stairs more times than I would like to remember. I was almost drowned once while swimming because she decided to sit on top of me while I was underwater. She was always destroying things, running away and would go into other peoples homes and scare the hell out of them. It's like having a two year old in an adult body who is uncontrollable and it wasn't fun. As far as I'm concerned I never really had a sister I couldn't have conversations with her, she did not have any type of feelings for me, I could not go to her with problems or even fight with her as normal sisters do. It takes a toll on your marriage, it takes a toll on the other children in the home. Unless you have lived this shut your mouth you have no place and no right to even comment on this!!!

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  30. As a pediatric home health nurse I understand the struggles parents of special needs children face. Glad the found a great facility because there are probably more bad ones than good. In Texas Medicaid provides coverage for in home nursing for the kiddos. Unfortunately it is often abused. I've worked in many homes where one parent may not work, are home all day and maybe spend 5 minutes the child. I've come to the conclusion its a bonding issue or ineffective coping... I don't know. In any case it totally changes their world. I think it is both a selfish and selfless act. Selfish in a good way because you have to save yourself before you are any good for anyone else especially the siblings. For all of the previous judgers they have no idea what these families go through. One of my mothers couldn't see her dying mother who lived across the country because she couldn't leave her kiddo. Some people have no idea yetquick to comment and judge

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  31. I have a handicapped granddaughter and I kept her this week end and totally see what my daughter is going through everyday. Is there any homes in the Houston area that are good. As she gets older she is very hard to handle.

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  32. The cruellest thing that you as a parent can do to a special needs child is to have that child with you for all your life. (The child will outlive the mother)
    What happens to that child then, when her mother passes away?
    The child has spent every waking moment with her mother for the past 40 years and now the mother has died.
    What will it be like for that child to then be placed in a home? She has just lost her mother and now she is removed from her surroundings into a strange environment....without her mother too.
    I had a special needs aunt who lived with her mom until her mom passed away. My special needs aunt was then placed in a home and she was not long there when she died. WHY? She was not sick. But she was pining for her mother. And her mother was not coming to see her ever again because mother was dead! She had no understanding of what was going on. That is cruel. That is short sightedness.
    The right thing to do is to place your child long before you are going to die. Let her adjust to her new surroundings. let her settle down and start to enjoy all the extra benefits she will experience. Bring her home for weekends and holidays. Help her to get use to the separation. Her placement home must become so familiar, second home to her. while she still has you with her to make the transition easier. Because one day you will not be there any more. But by then she is completely at home in her placement home.
    Anybody who judges parents with special needs children and the decisions we have to make, you are not thinking further than your nose! In fact you are not thinking at all. YOU EXPECT THE MOTHER TO KEEP THE CHILD FOREVER BUT....WHAT WILL BECOME OF THAT CHILD WHEN THE MOTHER DIES?????

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Thanks for sharing!



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