Last night after dinner, Gabriel, Lucas and I attended a free informational meeting by IHSS (In Home Supportive Services) advocates to learn more about what services we can receive for Lucas through this Department. We were referred to this agency through our case manager at the Regional Center a few months ago. Last week, we had an interview with a social worker from IHSS who deemed us eligible for $5,oo per month of diaper changing duties (see my previous post). I thought it odd that such a ludicrous amount would be offered to us and thought it was some kind of joke, but after having attended this meeting, it all became clear why the department is so stingy with their allotments to families.
I had posted an inquiry about IHSS on a facebook support group page and found that two families are receiving the maximum allowable hours for their child. One mom told me about the meeting last night and our family decided to attend and I am sooo glad we went. I am thinking of re-opening our closed case with IHSS to get protective supervision which we seem to be eligible for (in my opinion) but several factors hold me back which I will get into detail below. This mom used this advocacy group along with an attorney and was able to win the maximum hours for her 4 year old Down's Syndrome boy. She said the winning argument was the fact that he keeps poking his eyes for which he had surgery and has a shunt. The other mom said she spent $5,000 in attorney fees and lost her case but still fought for it the following year and won all by herself.
Larry Rosen, an IHSS advocate, and a parent of a child with autism facilitated the discussion last night at Barbara Reilly Community Center in Downey. He went over the nuts and bolts of IHSS and most importantly how Protective Supervision can benefit a family living with a child who has developmental delays and this is what he shared:
There are two kinds of waivers we can get from the Regional Center to help a family living with disability. The first is the 6-0 waiver from SSI (otherwise known as the SSI waiver)., The second waiver is what they call the "DD waiver" or 6V waiver from the Regional Center. 6-0 waiver is income based while families who do not qualify for it due to high income can apply for the 6V waiver. The other difference between the two is that 6-0 waiver is not institutionally deeming while the 6-V is, which is to say that should anything happen to either parent, the child would qualify to be placed in an institution due to their disability. Our family received the Medi-Cal waiver with institutional deeming which at the time we got it, thought little about how important it would be in our future.
In the brochure above, it states, " As a result of Protective Supervision, a parent receives an hourly wage to act as the child's stay-at-home caretaker". As I interpret it, this is in compensation for the government not having to pay for a child in the care of a government institution, which was the norm in the past. The renowned author, Pearl Buck, had a daughter with an intellectual disability and she wrote a book about her experiences of reluctantly having to place her child in an institution. This was the norm back then and most parents were encouraged to do so by their physicians. Due to increasing parental wish to keep their children at home and integrate them into their local communities and send them to special needs program in their own school districts, most of them were closed down and the government offered to pay the families to be the caregivers instead of having to pay for staff in these cold and sterile institutions. Besides, the State is saving so much money if you consider they don't need to pay for doctors, nurses, therapists, administrators to run nursing homes, ancilliary staff etc but instead pay parents minimum wage to do all of those tasks. I am so grateful we live in a country with such a wonderful social service available to the intellectually disabled community but last night's meeting made it clear that these benefits don't come by easily and we need to fight for everything as the government is wary of fraudulent claims.
Through the Community First Choice option, the minimum hours one can get through Protective Supervision is 195 hours which we get automatically if we qualify. Next year, LA county will be paying $11.00 per hour for care giving cost which adds ups to about $26,000 a year. The maximum amount including personal care costs for children with severe issues is 283 hours which equates to $36,000 per year. To qualify, we must first have a "presumptive disability" such as a PPD-NOS, autism, down's, CP..The two parent rule states that at least one parent must be working part time or less. Manual letter SS-15-01 defines what a full time parent is and there should be no assuming free full time care for a child - meaning, if the child is institutionally deemed, the government can't assume the family will give free care
During the interview with the social worker, it is important to have documented evidence of why a child needs Protective Supervision. This could be safety goals set up in the IEP such as goals to stop biting the finger, measures to help with fall precautions, which we have already in his IEP. Protective supervision is allotted only on the basis of dangerous behavior issues and not necessarily from a medical condition. For example, the little boy who was poking is eyes that had a shunt was granted protective supervision because of his behavior of poking his eyes which could be dangerous but not necessarily because he had a eye shunt. A child with epilepsy who falls frequently and injures himself may not qualify for benefits because it is a medical condition that poses a hazardous situation. However, if a child repetitively bangs his head and displays other self injurious behaviors, he would qualify for benefits. ABA goals to stop wandering such as the Stop/Go activity can also be helpful in our case. SOC 821 is an Assessment and Mental Functioning IHSS provides our pediatrician to confirm safety risks. Larry Rosen stated that the behavior must be "regular and random" and it is beneficial to keep a Dangerous Behavior Log to share with the social worker. Once the case is approved, the family gets a Notice of Action which breaks down all the hours of total need for which most (from 195-283) come from Protective Supervision.
This all sound really wonderful to have and a part of me says fight for this since I am Luki's most important advocate. But, the fact that IHSS gives such a hard time and is extremely strict on who gets payments makes me think twice about proceeding forward. Not only that, but some families have stated that social workers have called upon Child Protective Services for kids who are extremely dangerous. I do not want to have this organization involved in our family life at all (see previous blog on the corrupt nature of LA county's Child Protective Services). Once they get involved it can turn into a nightmare should they feel the child needs to be taken away and placed in foster care. Larry said that once we explain that this is a special needs child, Child Protective Services usually backs away.
I have 90 days to appeal my closed case and the clock is ticking. In the meantime, I will be compiling "evidence" of his dangerous behavior through is ABA and IEP goals.
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