Support for caring for special needs grandchildren
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!