CW: Restraint & Juvenile Detention:
According to a report issued Wednesday by a disability advocacy group, the system in charge of ensuring that California adults with developmental disabilities receive vital services is plagued by dramatic differences in spending by race, ethnicity, and where people live.
According to the research, several regional centers have stated that spending disparities are caused by cultural differences in whether adults live at home with their family or in more expensive facilities. Disability Voices United still found discrepancies in how much regional centers spend on clients of different races and ethnicities among adults living at home.
Lanterman Regional Center, which encompasses central Los Angeles, Hollywood, Glendale, and Pasadena, had the state’s largest monetary gap — $8,561 — in average spending per person on people of various racial and ethnic groups who were living at home, with Latinos receiving the least, according to the report.
Claudia Rivera stated that the Regional Center of Orange County had continuously denied her request for several services for her two disabled sons.
The only help the regional center has given their family is 30 hours of respite care each month, according to Rivera, whose 29-year-old son frequently gets lost for days or even weeks at a time. Where you reside counts just as much as your race and ethnicity, according to the survey. Additionally, significant differences from center to center in spending on adults in residential settings were also highlighted in the report.
The report found that Westside Regional Center, which serves the western and coastal regions of LA County, spent more than $30,000 on each adult client who was living at home, almost three times as much as San Diego Regional Center, which spent less than $11,000 on each adult client.
The report also brought attention to “enormous differences” in how much regional centers spent on helping people live independently away from their families. According to the research, Eastern Los Angeles Regional Center was spending an average of more than $80,000 for each of those clients, while Inland Regional Center, which covers clients in Riverside and San Bernardino counties, was only spending around $14,000 per client.
Unfortunately, this problem is not unique to California. Michaela Johnson, who lived in Mora, MN, was born with multiple disabilities. She was blind and had chronic lung disease and epilepsy.
Frightened and overwhelmed, Michaela’s parents sought help from Medicaid, which covers in-home nursing for medically fragile Minnesota children and people with disabilities. Much to the couple’s disappointment, Pine County officials said no. Michaela’s mother, Michelle, remembers county officials telling them to call 911 if their daughter experienced a medical emergency such as a seizure. They applied the following year and were given the same answer.
Ultimately, the family sold their house and moved to Kanabec County, 40 miles west. After being there for two months, Michaela was approved for in-home nursing care and medical equipment. While living in Kanabec county, the Johnsons were awarded more than $60,000 a year in funding for Michaela’s home health nurses.
The Johnsons are among tens of thousands of Minnesota families whose lives are upended by the arbitrary and confusing way Minnesota distributes money designed to help people with severe disabilities. Counties disburse this assistance in a form known as Medicaid waivers. The waivers provide people who have qualifying disabilities with more than $3 billion a year in services and support.
However, county rules are so inconsistent and unpredictable that some families have become nomads, moving and traveling considerable distances to acquire the essential care to which they are legally entitled under state and federal law.
Data from the state show concerning differences around Minnesota. For a waiver that covers the greatest level of personal and medical services at home in 2018, for instance, Dakota County paid an average of $109,000 per family, while Stearns County paid $50,000. Scott County paid $105,000 per recipient for a waiver to help patients with traumatic brain injuries, whereas Pope County paid only $22,500.
Approximately 86,000 Minnesotans, ranging from single mothers to metropolitan professionals, currently receive waivers. However, one-fifth of Minnesotans live in counties where waivers are rarely granted for those with high medical needs. Approximately 60 counties have given none or very few of those waivers over the past five years.
For many families, obtaining a Medicaid waiver is life-changing. A waiver can provide access tens of thousands of dollars in in-home services. These services can range from help with housework, to nursing care, to funding for wheelchair ramps.
Kathie Baxter, of Elk River, MN, whose daughter has severe mental health issues, moved in 2018. She moved from Sherburne County, which denied her request for help, to Dakota County. Now, she is getting tens of thousands of dollars to pay for a caregiver and regular life-skills training.
Kacey Dehncke moved to Anoka County, more than 100 miles from her hometown of Lowry, MN. She chose to move to receive services for her son Isaiah who is severely autistic. In Anoka County, Isaiah qualified for nearly $40,000 a year in services.
Trystan Frazee was sent to a juvenile detention center in Rochester, MN. Frazee was sent there following a meltdown at school, during which he stabbed an employee with a pencil and became violent while staff tried to restrain him.
Trystan’s mother, Tamara, had spent months telling social workers that her son wasn’t receiving enough help for his mental health challenges which include anxiety and depression.
In 2017, a Waseca County social worker visited their home. At the time, Trystan received approximately $50,000 a year in funds through a Medicaid waiver. Medicaid paid for therapy and PCAs to help him with activities of daily living and behavioral management. Following the visit in 2017, Trystan’s budget was cut by 1/3.
In an instant, the Frazees could no longer afford in-home therapy and other supports. Trystan became depressed and stopped leaving his bedroom, where he played video games for hours. In addition, his academic performance plummeted, and he began to engage in self-injurious behaviors.
The family decided to sell their home. Tamara became emotional when she began to think about moving out. She talked about her son’s first words and when he rode his first bike in the driveway.
Where someone lives or their ethnicity shouldn’t determine whether or not they receive services. Policies need to be reformed so people can get the help they need, regardless of where they live. These policies are discriminatory. For some people, moving to receive home healthcare and other services is not an option. Nationwide, millions of people are stuck on waiting lists for home and community-based services, which can last years. All people with disabilities should be able to get the help they need to be able to live their lives to the fullest.
Reyes, Emily Alpert. “In California, Spending on Adults with Disabilities Differs by ‘Race and Place’.” Los Angeles Times, Los Angeles Times Communications LLC, 27 Oct. 2022, https://www.latimes.com/california/story/2022-10-27/california-race-and-place-spending-on-adults-with-disabilities?_amp=true.
Serres, Chris, and Glenn Howatt. “’Geography Is Destiny’ for Families Living with Disabilities in Minnesota.” Star Tribune, Star Tribune Media Company, LLC, 16 Sept. 2019, https://m.startribune.com/medicaid-waivers-minnesota-disability-county-policies-differ-for-medically-fragile-children/558453052/?clmob=y&c=n.