We’re in Maine. But keep in mind that this got cobbled together nearly 20 years ago. The core, as I said earlier, was to structure her days and make sure she knew that people were depending on her to be certain places at certain times because they valued her work.
There were plenty of snags on the way to our daughter’s successes.
First, our local community behavioral health center flat-out refused to provide any services (beyond whatever counseling our insurance might pay for). Months later I figured out that though our daughter (I’ll call her Jane) had had two (2) week-long psych hospitalizations, they’d received records of only one–and they required a minimum of two. At the time, the BHC refused to explain, and thus I had no way to know I needed to ask the psych hospital (in another state) to re-fax her records.
Back then, I was working in a health-related organization an hour from home. I had a great supervisor who let me keep Jane curled up on a blanket in a corner of my office during the day, sucking her thumb and hallucinating (we did have a psychiatrist; the meds were being adjusted). My husband worked across town. I found a hospital-related outpatient program that agreed to keep her busy about 3 hours a day, though their target patients usually didn’t have psychotic disorders, and ferried her to it each morning. In the afternoon, my husband picked her up there and drove her to the VA, where a fantastic recreational therapist had agreed to let her volunteer in her program (Jane played piano and chatted with dementia patients, which everyone enjoyed). I’d pick her up there and bring her home.
Meanwhile, I was investigating group homes, practically shaking with fear. I did find a great one; it was another half-hour farther from our home, but hey, we were desperate. Getting her admitted was easy for us, but not for everyone–their core concern was “is she violent?” Thank God, she was not and never had been. That bumped her to the top of their list. In order to get paid, the group home did the application for Medicaid that we hadn’t even thought about, and advised us how to get started applying for SSI (which took two full years) and Voc Rehab.
Voc Rehab was a shoo-in, but her apartment was on the border between two of their regions, and her files got lost (or the coverage zone disputed) for about 6 months while I kept pestering people about why services weren’t starting. She tried and failed multiple jobs for about a year. She was way too groggy and slow for fast food, and when she tried to use the techniques voc rehab taught her to wash dishes in a real restaurant they fired her because they insisted on illegal methods. She loved working in a little cafe, but she acted odd and got marginalized and jeered at.
Meanwhile, my husband and I drove that 3-hour round trip to Jane’s apartment at least every week. We joined a church there and got her to accompany us, trying to integrate her into the community. That was sort of successful. (Actually we’d tried one church earlier, but I was too honest when someone asked what her problem was. The word “schizophrenia” slammed all doors in our face.)
There was less pressure on social services then than now–less austerity and thus more available service providers, so services were easier to obtain. I got her an Intensive Case Manager who was a godsend–she coordinated all Jane’s services for about a year. I tried & failed to get her an Assertive Community Treatment (ACT) team. That was what I call a “fail your way to success” problem–they have to be able to demonstrate huge gains for every patient, so a new patient must have failed badly at a few other programs first. ACT can’t be used to prevent those first failures, only to rise from their ashes.
We also obtained full guardianship (financial and medical) as well as Power of Attorney (POA). That meant hiring an attorney to see us through probate court. Jane was interviewed by a temporary Guardian ad Litem as part of the process. Our excellent lawyer made sure that her excellent verbal abilities weren’t held against our quest–she’s quite well-spoken and appears healthy at a glance. I had arranged for her to have a complete neuropsychological evaluation, and the report helped a lot both with guardianship and SSI. Luckily for us, Jane was in favor of our guardianship. She trusts us not to misuse it, and we haven’t. One counselor refused to comprehend my explanation that 1) as her legal guardian we’re entitled to communicate with therapists and 2) HIPAA permits therapists to listen to even non-guardian parents; they just can’t share info with them. Since the counselor wouldn’t let me explain that Jane has documented problems with comprehension and memory, she wound up firing our daughter for “not carrying through on agreed-upon goals.” So we found another.
Voc Rehab helped her apply to work in a nursing home. She did well there for several years, helping with diaper changes and such. But one CNA was a tyrant who picked on her so hard that Jane got scared to ask for help. She wound up “neglecting” a patient when she couldn’t locate any other helpers and got fired. But she found a job at an assisted living much closer to her new home with a supportive boss & co-workers, and has been doing fine for years.
We don’t have any million dollar stock portfolio to help out once we’re gone. We wrote our wills to include a special needs trust to shelter Jane’s tiny eventual inheritance from the rules of SSI (now SSDI, siince she’s worked for years) and Medicaid. Without that trust, the moment she inherits any money all her services will stop. No SSDI payments, no Medicaid or Medicare, nothing. Once she’d spent her inheritance down to nothing, she could re-apply… and that process takes about two years minimum (Republican politicians, with some Democrats agreeing, have under-funded these agencies so they’ve had to lay off thousands of the workers who screen applications). Her sister (our only other living relative) has no spare money, so I can’t imagine how Jane would survive.
As you can see, the burden was on us to keep finding new resources and making them work. It’s still on us to keep them in place. We’re now both in our 70s, and we’re grateful that Jane’s sister (who lives across the country) plans to take over when we become more disabled and eventually die. Thanks to the current (I hope temporary!) ascendancy of Republican politicians, services are getting harder and harder to obtain.