 Sanfilippo mom Perriann feels fortunate to reside in the state of California because of a work-from-home program ('IHSS') available to California residents that is intended for parents and caretakers of children with severe special needs. This program has allowed Perriann the gift of being able to watch her daughter Reyna grow (and change) during these precious and pivotal years.  Perriann Nieto lives in Riverside, California - with husband Armando (a flooring specialist) and their six (combined) children - about 50 miles southeast of downtown Los Angeles. Perriann's 8-year old daughter Reyna has Sanfilippo Syndrome (type A) - a neurodegenerative condition commonly referred to as "childhood Alzheimers" (only worse). Perriann's got a lot on her plate these days, with her daughter's seemingly never-ending slew of medical challenges (related to the disease) which are wreaking havoc on Reyna's mind and body. It's hard enough in today's world to raise and provide for a 'typical' family - never mind for a family raising a child with a relentless and debilitating disease like Sanfilippo Syndrome. In fact, here's an interesting (and depressing) piece of information -- A recent research study on the topic of financial stress on special needs families found that the average Sanfilippo family will suffer a cumulative 'dent' to their financial Net Worth somewhere in the range of $1 million (net 'hit' to net worth) over their lifetimes - all because one or more their children happened to hit the genetic sh*t lottery (1 in 75,000 odds) upon conception. That's a pretty darn big dent. During our conversation, Perriann told me about a work program that's available in her state (California) which allows parents/caregivers of severely disabled children/family members to stay home and get paid as a primary caretakers - in her case, for her daughter Reyna. It's a program called IHSS, which stands for In-Home Support Services - and it's been a godsend to the Nieto family. As Perriann stated, "It has been a big relief for me and my family - because it's allowed me to stay home, watch Reyna grow during these precious years, and not have to worry about somebody else needing to take care of her for me". According to Perriann, there aren't many (if any) other such programs out there in other states - at least not any that are nearly as generous and supportive as the one available in the state of California. In fact, that ended up becoming the deciding factor recently when Perriann and Armando were considering a move to another state. There simply wasn't anything out there (in other nearby states) that would replace it, income-wise, for a stay-at-home caretaker mom in Perriann's shoes. The family had no choice but to stay put in California. Following our conversation, I was eager to learn more about this IHSS program. Here's the website for IHSS, for those interested in learning more: https://www.cdss.ca.gov/in-home-supportive-services. And here are a few tidbits of information that is straight from the IHSS website: "The IHSS program provides in-home assistance to eligible aged, blind, and disabled individuals as an alternative to out-of-home care and enables recipients to remain safely in their own homes". Also from the website --- Eligibility criteria for all IHSS applicants and recipients include the following: 1) You must also be a California resident. 2) You must have a Medi-Cal eligibility determination. 3) You must live at home or an abode of your own choosing (acute care hospital, long-term care facilities, and licensed community care facilities are not considered "own home"). 4) You must submit a completed Health Care Certification form. It has been a big relief for me and my family - because it's allowed me to stay home, watch Reyna grow during these precious years, and not have to worry about somebody else needing to take care of her for me" 
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Mike Dobbyn, Archives
June 2024
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