Tuesday, July 17, 2012

Reflections on a News Story

Last week I read a news story on my phone that got me thinking.  (It wasn't that exact article, but this covers the story.)  Obviously, the story is disturbing.  What bothered me more, though, were the comments that various readers had posted.  They bothered me so much that I only read a couple before deciding I needed to focus on something else. 

The basics of the story:  Mom drives from Illinois to Tennessee where she pushes her 19 year old daughter through the door of a bar and leaves.  Her daughter had the mental capacity of a toddler, and was unable to communicate her name or where she was from.  The criticism of the mother was intense.  Most of the comments that I read thought that the mother should have continued to care for her daughter in her home forever. 

Let me be clear:  I don't approve of or condone what the mother did.  In the article I read, she said her minister told her that there were lots of Christians in Tennessee and they'd take good care of her daughter, so that's why she took her there to abandon her.  There were comments from state officials in Illinois stating what she had done was unnecessary, as there were resources available to her in Illinois that would have given her a couple of hours a day of in home help.  There was also great frustration that since the daughter was 19, the mom was not legally responsible for her and had broken no laws by abandoning her. 

With that background, here are my thoughts: 

I don't think any of those commentators understood what is involved in caring for a severely handicapped adult.  I am very fortunate that as a minister I can set my own hours and my schedule is so flexible, because there is no way I could have kept a regular job while caring for Daughter in my home.  Her medical appointments generally took a minimum of half a day, and there were months when she had several of them.  She couldn't be left unsupervised for her own safety.  It was like being the parent of a toddler, except toddlers are cute and you know they will grow and become more responsible.  Friends and family are very willing to give you a break and watch your toddler for you, the same isn't true with a developmentally handicapped adult.  Daycare is expensive, and adult daycare is even more expensive.  All the cuts to social services and medicaid have gutted the resources available to the developmentally handicapped.  I don't know what the particular services were that were available for this mother and daughter, but I know that even having Daughter in a full time day program didn't provide me the coverage to be gone at work for 8 or 9 hours.  I benefited because Daughter has always had a long bus ride, which added at least 90 minutes to her day.  Even that wouldn't have been enough to cover full time work outside the home when we were in Tiny Village. 

Providing care for a developmentally handicapped adult who needs full time supervision can make it impossible to work a full time job.  They qualify for SSI, but that isn't enough to cover their expenses, let alone make up for the income lost from not being able to work full time.  Setting the financial/employment challenges aside, caring for a developmentally handicapped adult is emotionally stressful.

I didn't realize how much stress it was until Daughter moved to the group home last fall.  Again, I don't know the particulars in this case, but I do know how exhausting it is to live with a toddler in an adult's body.  I also know it can be dangerous.  Toddler temper tantrums are no fun, but when thrown by someone in an adult body, they are dangerous.  They can be very dangerous.  If her daughter had injured one of her other children in a tantrum, the mother could have been charged with child neglect and lost custody of her other children. 

I am not in a position to judge the actions of that mother.  I can only begin to imagine how painful it must have been to abandon her daughter that way.  The article commented on the fact that the daughter had obviously been very well cared for prior to being abandoned.  I can only begin to imagine the stress that led her to such desperate measures. 

I can't imagine circumstances in which I would have done something like that with Daughter.  I can imagine the desperation that led the mother to take those actions.  Rather than judging the mother, let's look at what led to her actions.  Let's ponder what would have been necessary for her to keep her daughter in her home, or even in the same community.  Let's find out why those resources weren't available for her. 

One of the reasons I moved from Tiny Village was because I wanted more resources/opportunities for Daughter.  It would have been 5-10 years before there would have been funding for a group home for her (assuming that the state didn't make any deeper slashes to funding).  There was one state where I explored resources for Daughter after an excellent phone interview.  I made contact with ARC in that area, and the response was to not even consider moving to that state.  I wasn't surprised, as an online search had revealed that there were multiple lawsuits against the state with regard to lack of services. 

It was a real struggle finding a group home here that could handle Daughter-- on paper she doesn't qualify for the level of supervision she needs.  If her IQ tested 3 points higher, she wouldn't qualify for any of the services she is receiving.  I feel sorry for the young woman who was abandoned by her mother, and I feel sorry for the mother, who was driven to such desperate measures to assure her daughter was cared for. 

I suspect the same people who judged that mother so harshly would have been just as outraged if the mother had been forced to seek welfare to support her other children because she couldn't hold a job and care for her daughter.  I understand shrinking government budgets, competing demands, and hard choices.  I see this story as the consequences of some of those choices.  Those hard choices made at state and federal levels drove a desperate mother to make a hard choice, too.  My heart breaks for the mother and the daughter.  

What I have discovered, 8 months after Daughter moved out, is how big a toll living with her was taking on my emotional and physical health.  I'm very grateful that I live in an area where there are the resources that have provided a safe place for her to live away from me.  Oh, and even here it can be hard.  I spoke with the mother of a severely autistic son.  She finally got him into a group home by informing the county that she would not be picking him up from respite.  She had to abandon him-- true, it wasn't in a bar in a distant state, but she still had to abandon him before she could get the resources he needed for the safety and welfare of the entire family.  I'm grateful that there are resources available, and sad that there are families who have to abandon their adult children in order to access them. 


Anonymous said...

We were refused services for our son also. Special needs, but not special enough. The state is now paying for all his meds and daily needs as he is in jail. Would have been cheaper and more benifical to our son, to pay for the services he needed when he was younger.
My heart goes out to that mother and daughter.

Reverend Mom said...

I'm sorry that your son didn't receive the help and support that could have prevented his incarceration. I think most folks have no idea how hard it is to get needed services for people with special needs, or the toll caring for someone with special needs can take on a family-- even with services.

jwg said...

Do you read the Single Dad Disabled Daughter blog? Lots of interesting discussions about this and about people's reaction to it.

Reverend Mom said...

I don't read that-- I'll see if I can find it.