Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.
The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?
Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.
The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.
Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.
One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.
Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.
And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.
So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.
We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)