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Disability Caregivers Struggling Financially, Emotionally

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A nationwide survey of caregivers of those with developmental disabilities is offering new evidence this week of the hardships many families face in accessing support services.

The results of the survey released Tuesday in a report from The Arc show one in three families are on waiting lists for some type of government-funded service — ranging from personal assistance to respite care and housing — and they’re likely to remain in limbo for an average of over five years.

The survey, which was conducted last year, culled responses from nearly 5,000 caregivers from across the country.

Most adults with developmental disabilities are living with their parents and have no alternate housing plans for the future, the findings indicate. The majority lack high school diplomas and 85 percent are unemployed.

Their parents are feeling taxed financially and emotionally. One in five families said someone had to quit their job in order to provide care. And more than 80 percent of caregivers said they put their own retirement in jeopardy because they used savings to fund services for a loved one.

What’s more, the vast majority of caregivers report feeling tired and stressed some or most of the time. Nearly half say they have more caregiving responsibilities than they can handle, according to the report.

“The future is uncertain for these individuals and their families,” said Peter Berns, CEO of The Arc, who called the situation a “train wreck waiting to happen.”

“Although we have made some progress as a nation over the last 50 years, our nation has an obligation to do much more,” Berns said.

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Comments (29 Responses)

  1. SusanFordKeller says:

    When the trend was to institutionalize children with disabilities, the real wealth of those families was due, in part, to discarding the disabled child. Simply put, families conserved wealth and earning opportunities by getting rid of disabled family members. Those poor children – it’s heartbreaking to imagine the loneliness they lived.

    It would help immeasurably if parents who have a child with a disability could be paid caregivers for their own child. It would also help if the federal government routinely funded local special education budgets at the 40% originally called for in 1975. It would help if all education professionals had dual majors in regular ed. and special ed.

  2. suelowery says:

    Wonder how much was spent on yet another “study.” A study to tell everyone what they already know. A study that says, “big need–no money.” I am really tired of studies! Would prefer the money spent on some action to alleviate what everybody already knows.

  3. ecurra19 says:

    This topic of Disability Caregivers who are Struggling Financially, Emotionally has happen for so long and no one has done anything significant not even at Congress. What is worth talking about it? To provide a topic to a Media like this one? We need to be more responsible. We cannot patronize the attitude of the “Free Enterprise” were boys will be boys.

  4. ecurra19 says:

    Yes, the trends have not provided anything to children with disabilities. Society has to help those families and the idea to discard disabled childen cannot be patronized. Yes, we can see that families conserved wealth and earning opportunities by getting rid of disabled family members and those poor children – it’s heartbreaking to imagine the loneliness they lived but nothing else is been done. I am happy to read that Susan said that she would help if parents who have a child with a disability could be paid caregivers for their own children. It would help the federal government if they fund this families and not lock them out to be poor. It would help if all education professionals had dual majors in regular ed. and special ed. Much education most be done.

  5. jbehie says:

    Please note this article is about families/caregivers caring for their adult child with disabilities, not a minor child with disabilities. The emotional and financial strains are tremendous. It’s a whole other ballgame when we talk about services to adults with disabilities. This is not covered by IDEA and the schools. With the economic situation the way it is, states do not have the money to provide the needed services and relief to aging parents who are caregivers.

  6. jjjlytle says:

    Amen.

  7. Mary Mary quite says:

    As far as paying parents, CMS allows payment for Medicaid services to parents. It is the states who choose not to allow it. Most waivers will allow payment to families of ADULTS. Some states allow payment to “legally responsible relatives,” that is, parents of minors. CMS allows it for extra-ordinary care for minors and their example is that “it is ordinary to lift a 2-year-old, it is extra-ordinary to lift a 16-year-old.” However, that all does not solve the problem of money being available to pay for services. But if your state has the money to pay an unrelated direct care service worker, then they have the money to pay you. It is up to you to change what your state does or does not do. The hard part is getting past their attitude of “well, you’re the mother,” even when you are talking about ADULT children. My answer to that was that I would wait on hold while they contacted her father to find out what time he would volunteering tomorrow. And I also said that if it was necessary, they could send their “worker” to the homeless shelter to work with my ADULT daughter because that’s where we would be living. I wish I had a skill or a talent that allowed me to earning a large enough income to be able to live my life with my daughter WITHOUT government funding.

  8. SusanFordKeller says:

    To ecurra19: I’m afraid you misunderstood something I wrote. When I wrote “It would help immeasurably if parents who have a child with a disability could be paid caregivers for their own child.” that meant that a parent’s situation could be improved by the federal or state government by paying a parent of child with a disability to be the child’s caregiver. I have read of cases where adults with elderly parents who need assistance are paid to take care of their elderly parents.

  9. Cathyb58 says:

    How long will it take for legislators to figure out that the dollars need to follow the person? Close down some of these institutions and open more community settings. We can save this State hundreds of thousands of dollars by closing down the archaic settings and begin moving into the 21st Century.
    So sad that families have to suffer financially all because they love their family members and want what is only right and guaranteed through the constitution. I somehow remember being taught in school that “all men were created equal”????!!!!!!!!! Not in Illinois!!!!!!

  10. barbaravelazquez says:

    Working full time is difficult when you care for a disabled person. Everyone says they are all for taking care of disabled people until you have to leave work suddenly because the peerson you care for had a seizure at daycare, or poked themselves in the eye and scratched their cornea on purpose to get attention. You are passed over for raises and promotions. The boss thinks you are a clock watcher because you HAVE to be home before the van drops the person you care for off at home. They already dropped her off once and you weren’t there. Then there is the time you have to take while at work to take care of the disabled persons business. Foodshare reviews, medicaid and medicare reviews, Social security sends you a letter out of the blue that they can’t get in touch with you even though you haven’t moved or changed your phone number in 10 years. So now you have to spend hours on the phone…the majority of it on hold, hoping no one walks in and catches you doing it at work. You spend so much time just trying to make people do their jobs…trying to keep all the ducks in a row. They never stay in line though. It’s never ending. You have to take off time for doctors appointments, psyciatric appointments, dental appointments. You use up all your vacation time and sick days on the person you care for so when you get sick….and you will…you have no sick days left and you’re in trouble again.

  11. blondieblue227 says:

    practice inclusion in school and the disability employment rate will get better. raise the bar of expectation for students with disabilities. help them find ways to go to college. stop relying on the system for all your needs. it clearly doesn’t work. use community supports and build social capitol for all the support you need.

  12. gingerallen says:

    My daughter is 20. She has graduated with an associates degree by the grace of God. She struggles with these frightening voices and thoughts she has 24/7 which interfers with her daily living. She wants very much to get a job working with children, which she has been educated for. But no one is going to hire her with these problems. I’m in the road all the time taking her to doctors, theraphist, group meetings, any place I can to find answers to help her with her problem. While I have problems of my own with aneixty and depression and insombia. So yes my income is limited. She is on SSI with benefits, but in this econmy it does not take long until the money is gone. And I am a thrifty person. I too worry what will happen to her if I die. I am all she has. I don’t want her wondering the streets or locked up in an institution. I call people all the time trying to find out what to do. They might call back, if not you have to call them back hoping of finding something promising. So what else can you do.

  13. Hiskimmie says:

    I hear everyone saying the same thing we are living out. I could not go back to a teaching job, and yes, keep up with my son’s needs. The state is making my now abusive, ex-husband pay child support, and we get some medical assistance from Medicaid. I am blogging, and praying as I write, knowing that some fruit will come of this. I agree with the idea of getting paid for being a caregiver, however, in Texas they don’t do it for children. I have heard that they might do it for adult special needs people. I pray we can live in a state that does provide that kind of assistance, or the money will come rolling in…whichever comes first…:-)

  14. jennilm says:

    fyi – I believe this was a survey, not a study. Frankly, I think we do need more research studies, not necessarily about the caregiver burden, but about the actual real work being done by family caregivers that should be recognized and compensated, but is not. We’ve all heard tragic stories of what happens when families are no longer able to care for their disabled relatives for all kinds of reasons…not to mention all of those who just don’t have the necessarily skills or even know how to access care.

  15. seeandbesafe.com says:

    @barbaravelazquez
    My heart goes out to you! I’m in a scramble right now to arrange my life in such a way that I can be independent of my mother’s assistance. She has given up so much to be my primary caregiver for the 19 years of my injury. It is not a day that goes by that I don’t feel a sense of guilt for having required and demanded so much of her time. I was injured at 18, one year into college and at a time when my mother’s professional career was just starting to bud. now at 61 years old I hear her talk about her bucket list. It brings me to tears just writing this because I know that it was due to my injury and her incredible love for me that there are many dreams she has that have been deferred in order to secure my well-being. I did have the opportunity to buy her a house which provides some sense of security but it does not make up for the lost time. My mother always told us to make the most of yourselves. there are no yesterday stores in this world she’d say. A trillion dollars couldn’t buy you a yesterday. She told us that in relation to our own lives however I think about it now in relation to hers.

    There are a lot of things that I let only my mother do for me. In hindsight I think that that has been costly for the both of us.This is partly due to my private nature however more so it has to do with the fact that it’s so difficult to find consistent, well-trained and dedicated personal care attendants. In my experience this is the one thing that keeps parents grounded more so than anything else. They simply don’t have anyone they can trust. Once the healthcare industry develops a clear-cut standard for PCA’s and there is some consistency in the field, maybe more parents and disabled individuals will be freed up to live a more normal and independent life. But until then there should definitely be some consideration given to the idea of allowing parents and family caregivers the option of being hired by the home health agency of their choice to provide care for the child/family member.That Would Solve One Problem! However, in my mother’s case even if that were an option, being a full-time caregiver/PCA was not her career goal coming out of college. And so in my case I’m still stuck with the problem of not being able to give back to my mother what my injury and physical demands of taken from her and that is time. Damn!

  16. hdemic says:

    The state of Michigan (after I moved here, bought a house, accepted a position) changed thier laws dealing with Childrens Special Health Care Services. First was if your child was adopted you were not included in thier income agreement meaning I was allowed to work. They now changed thier guidelines stating I have to follow thier income guidelines. I have dropped to part time and impovirshed myself to keep her medical going. This has taken a great toll on my soul. I only hope I have a soul left when my daughter turns 18 so I am able to work again. (i am single and I do not get adoption help.) The state of Michigan just keeps saying you made your choice what ever that means.
    I am trying very hard not to live in anger constanly but folks- there are so many kids/adults so much worse off than me. We have got to get together on this. These many many agencies with all thier federal grants???. I am drinking another glass of wine.
    Sincerely,
    hdemic

  17. 926a.ashmeade@gmail.com says:

    The best caregiver for your disabled child is usually the parent but the parent cannot afford to stay home due to lack of funds. So therefore we remain tired and stressed and guilty for not doing we really have in our heart to do because its not enough time or just to tired. The Government should give a parent a choice to get help and care for their disabled child if they can.

  18. barbara kibble says:

    - HOW INSULTING to talk about my adult child as a piece of property. The pain in my heart is tramendous… to think of having someone else caring for her. I had to put her in the foster care system after I fell down a flight of stairs….did I want to do this ………NO. She was 14yrs of age and I also lost my job. Most of the children live in a one parent home. We do the best we can. DICARDING and GETTING OF….easy to point that remark (very cold ). My daughter is 39yrs old now. Has lived on her own for 10yrs. She is a quad with CP, and due to a past seizure disorder suffers from a mental disorder. I don’t expect help soon, if any. I am 68 yrs old and exhausted, can’t work full/ part time anymore. Daughter has been living a hotel for 2 1/2 yrs. I cook for her, take her meals, do her laundry, and change sheets in the middle of the night come rain or ice storms. I am it….our system is as dysfunctional as some of the professionals writing comments on this site. No idea as to what really goes on in the family unit dealing with a disability. Education gives you words in a book …families with special needs children or adults need your to show respect ….., I only had a slight insight into what my daughter had to deal with when I fell down..I was disabled for a long time, but, I also knew it would not last forever. I think professionals have their’ plate full….but, TRY and think before you judge and speak or write. I worked in the medical profession for 46yrs and some of those comments would be growns for dismissal.

  19. p valcan says:

    I am a 57 yr old with heart issues and fibromyalgia. I care for my 21 yr old son. Hes diagnosed with bi-polar, tourette syndrome, opossitional defiant behavior disorder, ocd, adhd, and blood sugar anger issues. If his world around him doesn’t look “clean , orderly or new”, he rips things out and throws them away! He gutted 2 bathrooms, ripped carpet out, threw furniture away, and damaged many windows and doors beyond repair. I had to replace a 1963 furnace, and 600 went to the air conditioning repair. Then the refrigerator, garbage disposal, stove, microwave, and washer broke! Wheew! I have refinanced my house twice, but credit cads r up to 64000. I am being forced to sell my house to get out of debt. My son will never be able to live on his own, and I have a pretty good job, but will retire in 2 yrs and will only make half of my salary then. Im worried hell be forced to take care of me, and that will be disasterous. Where is help? Are there grants? How can I fix this? Your help will greatly be appreciated. Thank You Sincerely, P Valcan

  20. barbara kibble says:

    Dear P valcon….I am not much at formal writing. My heart is heavy for you and the situation you deal with. My 39yrs old cerebral palsy, quad daughter suffers from schizophrenia and other mental effects from her seizures. I tried to have my daughter live with me….redid my home for her spent alot of my retirement money to make my home accessible for her. After she was evicted from an apartment 4yrs ago and many hotels later….she has refused to live with me and lives in a hotel 5mins away. I can’t get help from mental health because she has not threatened to kill /hurt me or herself. I do not have gardianship over her. She refuses me” power of atorney” in order to help her. I have gone everywhere. I have been very ill for the past 1 1/2 yrs and people get sick of hearing the same old story. It was suggested that I attend the NAMI program. National assoc. for mental illiness. It help educated me into what is happening inside the brain of my child and the function of the brain. I found that I had a place to share and hear what others are going thru. It may not have given me solution, but it gave me a place surrounded by sincere understanding. I don’t have a bucket list anymore, because that was to painful. I have learned to live the moment. I love God even more, tho there are times I can’t even pray because there is such a hugh void. I have had friends lose their’ children to death; they grieve always in their hearts. We have children alive and grieving is our constant sidekick next to fear of the future. Who knows the answer to our lives and what is ahead. Today is Thanksgiving and I went to see my daughter, came and went like the wind with her vulgar words and screams following me down the hall. The very few times I am able to attend to her needs with profanity thrown my way, I will sit and thank God for the time of blessing. It is becoming less and less. I did learn to years ago,to seperate the person from the disease. Letting go and accepting that the human being I come face to face with will someday no longer know me , has been a journey of great awareness. Somethings are not important to me…My heart has grown much, but my body can’t tolerate as much. My family is no more. Just as death is seen differently by those view it ….so is mental illness and disabilities. In the beginning it is a novility by those looking in , but down the road there is no one interested. I am the only one involved. Working in the medical profession I have seen and been involved with many disease processes. But, mental illiness takes the cake. It is like no other disease…..It shatters the lives around it and when those lives are gone it still servives. Caregivers are the most overlooked and misunderstood….the least helped…..Are there telethons for mental illiness? Dear p valcon ….I can only support you from afar and pray for you from my heart. It is a heavy burden those shoulders carry. God bless you over and over ….He is all we have

  21. leona says:

    i am a single parent raising two disabled children. all i want is a grant to help me buy a wasihng machine because i am unemployed and i am unable to afford to buy a washing machine, the computer i have was given too me.all i want is free grant of $500.00 hundred dollars so i do not have to keep spending $20.00 every two weeks to wash clothes it is very costly and depressing. please help me to get a grant. this is suppose to the the land of opportunity.

  22. leona says:

    i am so fustrated because i have two disabled children and i am not getting enough financial help. i am unable to work and the food stamps i get are not enough to last through the month. all i want is a free grant to help me buy a washing machine i am unable to afford going to the laundry matt every week. i need that money to buy extra food and clothing. please tell me that this world id not that evil and selfish,if the politicans can steal money from the poor then i should be able to obtain a free grant to purchase a washing machine. i am not hurting anyone i just want a washing machine.

  23. leona says:

    why is this world so cold and callus when it comes to the disabled when i take my two disabled children out why do children stare at them? i do not appreciate it those children are not perfect and there caregivers are idiots they do not teach them manners this is why there is no future for anyone.i am sick and tired of this evil world.this country should be ashame of itself this country has gone to hell.

  24. candie says:

    i am mother of soon to be 22 year old with autism she will finish school this year and i been trying find adult daycare program i find one but they said i live to far away and i live in middle tennessee..its hard i take care of her and all i just need a place where she can go during the day and not be bored at home thanks.

  25. Charlette says:

    I am the single mother of 2 disabled sons, one is an adult, the other will be next month. I cannot juggle a job and care for my children with their many special needs, and the many on-going appointments required to keep them healthy, etc. The stress level is far to over-whelming — yet so is not having enough income to make ends meet. I am a teacher, I could be working — and even building up retirement, but the parent of a handicapped high need child (in my case 2 of them) cannot pursue career and the American dream. I will not have retirement, and I am almost 57 now. I will not have enough social security built up for a good monthly check when I do “retire” at 65 officially. I will not own a home of our own… and yet – though I have a full time job (caring for my sons) that would cost the state WAY more if both of them were in group homes or similar arrangements (as they require 24-hr supervision and total care), I can’t get any assistance/pay for caring for them in my home — and because they live with me, they even cut their SSI checks, because the cost of living has to be split 3 ways and so they don’t even get their full benefit as they would if they DID NOT live with me — so what do you do?? Do you exchange your kids for an income?? And even if you chose that, waiting list funding won’t allow for it. Once, my oldest was in a group home for about 8 months — it grieved my soul to the point that if he had been left there, I would have grieved myself to death. The level of care is just not there – no matter where it is or how good a reputation (he lived in 3 different homes during the course of that time). They didn’t know how to “read” him as I do – (he cannot communicate his needs) – so he ended up in the hospital twice – almost died both times… The government will pay able-bodied citizens to sit home on their butt when they could be working, they will pay someone else to come into your home and help with the care (if the funding is available), yet even though the parent who sacrifices to care for their loved ones with a disability is saving the state tens of thousands of dollars annually by caring for them in their own home by their own family, they can’t see why that parent should expect or need compensation of any kind. I just don’t get it. I worked as a case manager several years ago, and prepared the budgets for disabled clients living in group homes and independently (but requiring 24-hr staff), and I want to tell you that on a per-client basis, those budgets were anywhere from in the $80′s to over $100K per person — for the state to provide. I can tell you that ANY PARENT would take less than HALF of these outrageous amounts, and be glad to have it. This could take a huge financial strain and stress off of the family … we have enough stresses in our day to day lives, and if we could work AND take proper care of our loved ones, AND be able to juggle it all, AND handle to overwhelming mental/emotional stress involved in trying to do it all — especially as a single parent who is not getting any younger — believe me we would.

  26. Brenda Stewart says:

    I have been a Caregiver for many years serving the Elderly, Youth, Developmentally and Mentally disabled, families in crisis, and Teen Mothers. I have given myself away and found myself in a situation where I need help. I am facing eviction. I need financial assistance to avoid eviction, automobile repair to continue looking for sustainable employment. Is there any help out there for Caregivers? I am currently Substitute teaching young people with developmental, emotional, behavioral and mental disorders. Due to cuts the school district is not asking for help much this year. Any one out who wants to take a chance on a hard working Caregiver/Social Service Professional please contact me as soon as possible.

  27. Shauntaye Parsons says:

    My son is currently in the hospital, he was in ICU for 3 days suffering from a bleed around his brain (which made the 10th time he has experienced this) he has a blood disease called hemophilia which prevents his blood from clotting. I have been taking care of him for 21 years now. I recently obtained my Associate Degree and now pursuing my Bachelor Degree with a concentration on Psychology. I am 44 years old and face so many adversities being a single mom of two sons and now a new grandmother. I could sure use some emotional as well as financial support.

  28. alma says:

    My heart goes out to everybody. Just like some of you I have lost my career , health and even my mental health has been affected. When my boss came to my office and told me ..if you want to continue with your career you have to put that child up for adoption..How do you just put a child out cause he doesnt suit your needs or wants? It been several years and we are financially broke..my house is being foreclosed on and we have no place to go but do I regret keeping him?..NO!..We have come a long way in science and technology but have never advance in humanity. As for our goverment thats another joke. They are doing nothing for mental health and now they are trying to cut off social security too. So who will care for the aging? Yes, the burden of caring for a child with emotional health problems is very overwhelming and yes we need a financial support system in place but will it happen. No..

  29. HaJoLa says:

    I am the parent of a 27 year old Developmentally disabled young adult. I and my wife have been caretakers for her since she was placed with us for adoption. We have stood by her in thick and thin advocating everything she needed to get thru life. Her maladies are not physical, but mental. Sometimes, as harsh as it may sound, I think we would have fared better had she been physically instead of mentally disabled. She has a number of challenges that make life extremely difficult for all of us, especially now since we are close to 70 and becoming less physically able to address her needs properly. We never had any intentions of dumping her as some people clam parents of these disabled folks do! However, we have strained not only our physical and financial assets but also our emotional assets as well. Soon we will no longer be around to provide for our daughter and having used almost all of our financial asstes, she will become dependent on social welfare programs for the remainder of her life. She can and does work, pays taxes and has access to medicaid and my social security benefits. She is on several costly medications to help with her mental difficulties. Those who criticize people for discarding their children need to walk a mile in these peoples shoes. We have, know how frustrating and tiring and challenging it is and can be. If you who criticize think you know or can do better, step up to the plate and invite one of those tossed away people with disabilities into your home and care for them, walk the walk instead of climbing on your high horse and just talking the talk!

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