I spoke recently with friends Holly Unruh (UCSB) and Aimee Harlib (UCSD) two amazing women who are currently in the University of California system while navigating CA Public Education and Services for their children. My desire was to link their struggles across these institutions visibly with their day to day life.
They’re used to being admired or treated as other in decidedly less supportive ways. But what do our public educational systems provide in the way of inclusion and reliability?
So my question to them now is: as student parents with special needs kids in public school how do you work with others? Thinking concretely here. How many hours, with whom and in what role?
HOLLY:
Short answer: 1 social worker, 1 specialist from the First 5 CATCH program, 1 therapist from a private non-profit, CALM through their HOPE program, 2 separate sets of teachers at the children’s center our boys attend, and the center’s educational specialist, when there is funding to fill that position.
We get about 2 hours a week of special services in the classroom and at home and the center assigns an additional aide to our older boy’s classroom (for him and other high needs kids in that class).
We recap weekly with the therapist and daily with teachers. To date most compensation for these services has come through medi-cal. There seems to be some confusion as to how health insurers might pay for/offer any of these services.
AIMEE:
Current Services (weekly):
Compensated through San Diego Regional Center:
-We receive in home Applied Behavioral Therapy (parent lead) two days a week/two hours a session (we just dropped from five days a week this month), we also receive four hours a month of one-on-one consultation with a supervisor from the same ABA provider (A.C.E.S.).
-Respite Care: (4hour increments), 16 hours/month-we use the same nanny but have access to a database (college nannies and tutors).
Compensated through San Diego Unified School District:
Jackson is in the SEEK Program (special education) he attends 4 days a week/4hours. In this program, on the same campus as his typical pre-school program, he receives: Speech therapy (2 hours/week); Adaptive PE (1hour/week); Occupational Therapy (2 hours/week) as well as an academic program all based on the goals in his IEP. His primary teacher makes a home visit once a month with updates, etc.
Provided/compensated State Services:
Head-Start State Pre-school (Mon-Fri), this typical pre-school is actually better than the UCSD private pre-school, The UCSD Early Childcare Education Center let us go after they were unable to accommodate Jackson in August of 2010 (illegally).
Healthy Families: medical/dental services, provided through the state of California
Jackson will turn five in June of this year, he was diagnosed on the
Autism spectrum a few months before his third birthday (March, 2009) but I attempted to find resources and some sort of diagnosis for approximately eight months prior to that date. We began with a referral to CP3 (not sure what the acronym stands for but it is an under three program), which I believe is a division of California’s First Five program.
We had an in home assessment and met with an occupational therapist (this was November, 2008). After his diagnosis we were referred to San Diego Regional Center and had difficulties receiving services due to a horrible coordinator but, after we switched to our current coordinator, it has been easy to find services within our access (Regional Center has had numerous and devastating budget cuts over the last couple of years).
I am highly involved in Jackson’s care, as most parents of children with special needs are. Outside of his pre-school environment and respite care, most of his services are parent lead:meaning – I am present and running the program. I am updated on a daily basis by his pre-school teachers both in his inclusion program and special education class.
It is difficult to breakdown Jackson’s services because most areas of his care are provided in teams (other than the Respite Nanny). Although I regard the individuals of the team as part of our family,
as Jackson grows older the services decrease.
We are in the process of paring back all of our services in preparation for this. We are low-income, so all of our services are provided through either State Programs or our school district. Many services are provided for children under five in California, after five I believe it is difficult to find access.
I am sure that I am leaving a great amount of information out, but at least this is a start.