Support for caring for special needs grandchildren

[cmNeb]

I don't see anything here or elsewhere about grandparents who care full-time (M-F work hours) for special needs grandchildren. When my 9-year-old autistic grandson was told by his public school that they could no longer meet his needs in school due to behaviors that were not safe for him or others, I became a full-time caregiver. His parents can't afford not to work, or afford to pay me for his care. I live 20 min away, so there are also transportation costs involved for all of us. They are in the process of getting some limited disability services through the state, but none cover more than occasional respite care and help with his expensive medications. 

To make this work financially, I have taken early Social Security at 63 to be home full-time with him. Fortunately, my husband is still working even though he is 65 and has health issues, so we worry about how long he can continue. Finding anyone able or willing to care for him is very challenging. He needs someone one-on-one in a controlled environment where he can't run away or hurt himself. We need to control the stimulation - light, sound, etc. at times. Fortunately, I am an RN who worked in mental health much of the time in the children's unit, so I know how to deal with his issues, but it is difficult when he becomes physically aggressive. It happens rarely in this more controlled and less stimulating environment, but it is a challenge and even a danger occasionally. We have spent significant money installing an expensive security system with locks and cameras, and I wear a panic button to call 911 if needed. We remodeled a bedroom into a safe classroom with protected windows and furniture difficult to tip over or move.

I detail this because I am sure I am not the only grandparent who had to make significant alterations to their home to care for a special needs grandchild without any financial support to do so. I would do anything to keep him safe and successful in school - which he is completing through online courses I supervise. (I won't go into what I think of how the school handled things.) But I am sure other families are less able to make these kinds of interventions. The most common alternative presented was to place him in a long-term facility, which likely would result in the need to make him a ward of the state. That would be a highly undesirable choice and not in his best interest in any way. He is improving greatly emotionally and educationally in this setting and knows we all love him. 

Certainly, caring for him ourselves is also more cost-effective for the taxpayers than caring for him in a facility. I'm sure other people find themselves in similar situations. Wouldn't it make more sense for there to be some tax credit or other financial support to choose to care for grandchildren or a parent in similar situations at home? I think of the many children who require complete physical care due to disabilities, as well as those with neurological disorders like our grandson - many of whom the public schools can't or won't care for. 

I'm curious what others might know about this need. Is that an unrealistic expectation? Is it too uncommon to address it with legislation? Are there resources we aren't considering? There are many other services available in our area for autistic adults, but not more for children, much less for those who don't do well in group settings. He has services through Easter Seals, Judevine, a therapist, a psychiatrist, a pediatrician, and a state caseworker.  Do you think this is something AARP might champion on behalf of grandparents? Just looking for what others think. Thanks!

[KimB517682]

I would so love to connect with you. My daughter was at the brink of sending my 15-year-old grandson to a group home at the age of 13. I had just started and re-entered the workforce full-time when she put this on me within a week. I was able to continue working full-time for a while having him full-time 24/7/365 but have since reduce my hours to part-time. I need to work part time for my own sanity. It is exhausting and I find myself butting heads even with my husband for choosing this road. Our youngest child just turned 21 this week so he wants to start to relax. But he has also many health issues with severe arthritis and gout, cardiac, and there’s always something going on with his health. He drags himself physically to work every day.

But I love my grandson dearly and he’s half my heart all he has to do is smile and it speaks volumes. He is nonverbal, he stems and perseverates and has this laugh that just is incessant.

He is now attending a private school that focuses on autism. They love him there, but there have been times when he has been challenging and he requires one on one. That additional one on one almost got us to the point where his private scholarship wouldn’t meet the financial obligations so I was at push comes to shove. I was gonna have to withdraw him and put him in a private mini mall ABA clinic or gets no interaction or outside Play.  This constant need for resourcefulness with finances, insurance, doctors and therapy providers becomes sometimes hopeless and beyond exhausting.

So I agree there should be some kind of a payment method or financial assistance to help support those caring for special needs children, and adults at home. far less costly and better outcomes than institutions and group homes where I have been told you can’t put together with gorilla glue what you get out of there. I cannot imagine doing all the many years of hard work we’ve done with him and much of that is attributed to my daughter who just experienced such burnout, could do it anymore . They’ve been many times when my daughter could not work because public school was not an option  And daycare was also not an option. It certainly is a struggle. His ex father lives across the country and is a retired disabled marine who has had two more children with two other women and is actually now fighting to reduce for eliminate child support. It’s just a constant battle. My daughter now has to hire an attorney for $4000 to deal with that.

my dream would be to wake up, go to work come home relax have a cup of herbal tea and have no problems. Just doesn’t seem to be in the cards for me.

I’m not sure how to contact you with my email or phone number, but I would love to talk to you. 

[AnalisaC365207]

First of all, kudos to you and your husband for stepping up to help with your grandchild!  That is really tremendous and amazing of you and I would imagine that while rewarding, it is also extremely stressful and exhausting for you!  I am a parent of a special needs child (Bainbridge-Roper's Syndrome, Autism, non-verbal, PICA, sensory processing disorder, microcephaly, global development delays) as well as a teacher (New York State - near Rochester).  I don't know what state you are in and perhaps in your state, they are allowed to do this, but I have NEVER heard of a school district just basically kicking a kid to the curb due to special needs!  Even in our state, if a kid gets into serious behavioral trouble and have gotten suspended (not related to special needs), we still have the obligation to provide outside tutoring for them as long as the suspension is in place.  There are laws that force school districts to provide an education for students with special needs.  I would assume your grandchild has an IEP in place as you have said that they are Autistic.  If so, by law, the school has to follow the IEP and provides services.  Once again, I am speaking from my experience in NYS.  In my personal experience, our home school district has to transport my daughter to and from a special school that specializes in students with special needs.  I don't think that your situation is legally acceptable.  I strongly recommend checking out these website and calling the pertinent phone numbers to speak about your specific situation and maybe you can get some assistance:  https://sites.ed.gov/idea/parents-families/ , https://sites.ed.gov/idea/states/, and https://www.ada.gov. 

Best wishes and good luck!

Analisa Chapman

[KimB517682]

My sister was a principal in Massachusetts. Private schools certainly don’t have to meet the needs of any child. They actually here in Florida review and IEP to see if they can meet your needs and may not admit you, but certainly Public schools are obligated as you have stated to meet the needs of any student. it isn’t legal and so often I do see schools trying to do things that aren’t compliant with law. But that is extreme is not to provide services to a student in a public setting. Kudos for your hard work. My daughter has been very strong and developed OCD and PTSD from all of this. And no one really understands who doesn’t live in our world. So it’s nice to connect with you all. 

[shagalon]

Check with your local family caregiver support office and ask for an options assessment. They will provide you with all of the resources available in your area. It sounds like you tapped into a few already. Keep sharing your story. Work is being done in every state to try to help family caregivers. In my state we have a commission which comprises all of the government agencies and any interested stakeholders to try to work together to help families like yours. If you have a commission dedicated to family caregiver issues in your state, you should reach out to them when you can. The commission is through the governors office and there may also be a local commission. Together we can do more.

[fffred]

@cmNeb 

Ma'am, my hat is off to you and your husband. What you folks are doing is truly an act of love and earns my admiration.

I can't offer much more than that. I have no insight into particular programs for your family. Though I have a passing familiarity that there may be programs, public and private to help. My cousin's daughter (now in her 40's and married) was born with a type of spina bifida and has been in a power wheelchair since she was a child. I know my cousin was able to get state and private support for her. My wife's sister and her young adult daughter both have schizophrenia and get financial support from their province (they live in Canada). Even so though, they require a LOT of personal support just managing their daily lives on an ongoing basis and most of this falls to my wife (and me), so I am aware of how stressful this can be. Again, my heart goes out to you and your husband.

I am sure there must be some support forums on the internet for those in your situation. Just being able to discuss things with others in the same situation is helpful...both for knowledge and helpful tips and just to blow off steam. I hope you can find a group like that. I am not a Facebook fan but perhaps that's a place to start looking.

I wish you the best!