The real value for us though has been the parents session led by an expert counselor with serious personal experience with "the spectrum". The "AuSM" also has q1-2 week skillshop topics and an excellent member's only Lending Library (click to browse collection): "Library materials are available for loan to all current AuSM members. You may check out up to 6 items for 3 weeks at a time."
In particular we've been learning more about schools (Junior High looms in 1.3 years), SSI, and PCA services.
Form what we've learned and seen there's no simple Junior High answer for "Sam". We have, however, learned of arrangements that will work for "Nick", such as leaving classes 2-3 minutes early to avoid the hallway pandemonium. For "Sam" we need something more like Lionsgate, which is massively oversubscribed even before it's operational. We're thinking hard.
Beyond High School are programs like Minnesota Life College (private, $$), school district "transition services", and SSI (social security disability).
The SSI bit is important for all children with developmental disabilities. Most will need to apply for SSI disability on their 18th birthday (if not earlier). Apparently if one waits too long to apply for SSI some "window" for developmental SSI closes, and one is eligible only the American's ridiculously small standard SSI ($370/month - enough for heat maybe).
Which brings me back to the PCA (personal care attendant) topic. The AuSM has an excellent handout called Services for Children with ASD (scan PDF 103K) I'll summarize here and expand upon:
- TEFRA: medical assistance, but qualification based on disability. If a child is on Medical Assistance (ex: foster adoption) or qualifies for SSI (disability) they don't need TEFRA. TEFRA has a family fee. TEFRA will help pay for PCA Services and Waivered services.
- PCA services (see esp MN PCA Choice Option). If two children in a family qualify an incremental amount is available above the usual family rate. (See also my PCA comments, below.)
- Waivered services (see MR/RC (mental retardation) waiver and CADI waiver). The CDSC waiver option (consumer-directed community supports) "parents of minors may be paid for daily care tasks." This has a special appeal for us (below).
Our special challenge is that Sam makes everyday high functioning autism look simple by comparison. We need a PCA with vast patience, creativity, affection, empathy, physical durability, training athletic capacity, maturity, reliability, and knowledge of swimming, golf, fishing, paddling, horseback riding, bicycling, inline skating, hockey, ice skating, skiing/snowboarding, and baseball (latter at a high school level). Experience with autism, ADD, EBD, ODD, and anxiety disorder a plus. Must be willing to work for very little money on weekends and nights.
I think the problem is clear. Sam needs his parents to manage him -- nobody else can do that.
So, what we need is an extra set of hands, with a secondary focus on helping Sam's sibs, including a neurotypical child. A nanny with a bit of special needs experience, or just empathy and wisdom, would do very well. If we could get a CDSC waiver we'd be able to the money paid "us" to buy services for the entire family -- freeing up time and energy to keep all the balls in the air.
So that's our latest project. As we push that along we've also learned of two recommended PCA agencies for waivers and other variations and a woman who works as a "Flexible Case Manager" (a role that may be related to the waiver programs.)
- LifeWorks customized support services: "A shift in funding in Minnesota in 1999 gives people with disabilities and their families more control over the services they receive. Lifeworks’ Customized Support Services (CSS) offers the Agency with Choice and Fiscal Support Entity services required for families to access these waivered funds. This allows children to continue to live at home, gives families the freedom to live a more normal life, and saves money for Minnesota taxpayers." I'm told a typical cost might be $175/month for their services.
- St. David's Child Development and Family Services (Minneotonka): "St. David’s offers an additional service option that individuals or families can choose under the PCA program model called PCA Choice. For this service option, the client or family is responsible for interviewing, hiring, training and supervising any staff. The individual or client enters into a written agreement with St. David’s for billing and payroll services."