Constant threat
of cutbacks haunts
mentally illState's incessant monitoring,
By Pat Gee
evaluation and rule changes hound
parents and waste timeBy constantly threatening to cut services for mentally ill children, the state agency in charge of helping these children has diminished the mental health of their parents.
As a mother of a multiply handicapped child, I do not accept the most recently given explanation that services were reduced because of a miscommunication from the Child and Adolescent Mental Health Division. Parents were told a new "directive" issued in December would reduce the maximum allowable number of service hours from 120 to 80 per month; any exceptions would require additional review and paperwork to justify the need for therapeutic aides.
Parents depending on these services are always anxious and afraid that some new decree from the division will reduce our services.
We are already saddled with the debilitating stress of being primary caregivers of handicapped children and most of us passed burn-out long ago. The people who are supposed to be making my job as a parent easier have instead made it harder.
As a multitude of parents made clear at two recent public meetings, we are tired of jumping through hoops to get enough help. The mental health division is always changing the rules of the game. How much more do parents have to prove that their children need a great deal of help from the department when most of their case files are already three inches thick with documentation?
This month I've had to scramble to get an IEP (Individualized Education Program) meeting called involving several school and health-care officials to ensure that my son's mental health services were clearly written into the legally binding program. Can you envision the wasted manpower hours that would be involved in holding hundreds of such meetings statewide to ensure we have our services maintained?
If it's not this, it will be something else. Parents get the feeling that the mental division is always looking for ways to cut services. The division says it has to be accountable for every dollar spent and must document the case and constantly review it. Everyone's case gets reviewed every month in order to get authorization, and no one rests easy until we hear services have been approved.
All parents want is to get enough help so they can maintain their sanity and energy to keep taking care of their children at home instead of putting them into foster care. Waimano Home is no longer admitting anyone, and is having trouble relocating its clients into community homes, so it's not as if there is a lot of quality care outside our homes.
A lawsuit has already been won against the state for being derelict in its duty in providing an adequate system of education and mental health services for disabled children. Out of that came the Felix-Waihee consent decree, which is mandating the state to make corrections by June 2000 or face a $25,000 fine a day.
But if the state is being pressured to correct its shortcomings, why is it still trying to shortchange its existing clients? It's like robbing Peter to pay Paul.
As any parent knows, the worst way to hurt a person is through his children. As parents of disabled children, we are even more vulnerable because they will depend on us for the rest of our lives.
We are used to heartbreak and frustration more than most parents because of our kids, but, if anything, it has made us more resilient and persevering. We cannot afford to accept any less help than we are getting if we want to make sure they are well taken care of.
Pat Gee is a Star-Bulletin staff member.
