The Fiscal Model is Broken
Full-time care for an adult with autism is expensive.
How expensive? Let’s just play with numbers for a minute * :
Assume you pay $20/hr for help.
You need care around the clock (not just an 8-hour day). $20/hr * 24 Hrs = $480 per day.
$480 per day * 30 days per month = $14,400 per month, just for personal care/help.
If we’re providing food ($1,000), housing ($1,000 - $2,000), and any kind of other expense, the cost to care for an individual can run up close to $20,000 per month.
There is no State or Federal help which pays that much money. It’s not in the budget, and taxpayers aren’t excited about paying more taxes to offset these costs.
So, how does long-term care work? (Because I know there are group homes out there - and more seem to be opening all the time…)
How it works
The group homes combine State funding, cost reductions, and economies of scale to achieve profitability. (and keep in mind most group homes are privately-owned and for-profit businesses.)
Let’s pretend the State will provide $10,000* per month funding, per individual living in the house. So a home with 4 people living there receives $40,000 in revenue.
The people living in the home will not receive 1:1 support for ongoing communication and facilitation. There will likely be 2 employees on site for the 4 people living there.
The workers will be paid average to below-average wages. Let’s pretend they get paid $18/hr for this example. $18 per hour * 2 workers * 24 hours/day * 30 days per month = $26,000 per month in wages.
Add in a $3,000 mortgage, $1,000 per week for food and household items ($4,000 per month), $2,000 for insurance and transportation, and $1,000 miscellaneous, and we have an additional $10,000 per month in expenses.
$40,000 State-provided revenue, less $26,000 wages, less $10,000 expenses, equals $4,000 per month Profit.
No one is going to get rich by owning a group home - that’s clear to see. But if you can own 3 or 4 homes (or more)..? You can see why there are new homes opening all the time.
Why it’s Broken
The State-funded group home model (as outlined above) is broken for a number of reasons:
Not enough support. The people who do well with 2 support staff for 4 individuals are either very high-functioning with near-independent skills, or very low-functioning in terms of mental and physical abilities. This represents the very top and bottom of the autism community. The majority of adults with autism are in between these points, and require additional help both to get through basic tasks and to facilitate communication and navigate social, vocational, volunteer, and recreational activities.
Wage Rate - skill set: Facilitating an adult with autism through settings and situations which lead to a sense of enrichment and fulfillment is extremely rewarding. But it’s also not an easy-breezy kind of job; it takes energy and enthusiasm and compassion and initiative to be successful. These attributes are not found in abundance on the low end of the pay scale. Finding, training, and retaining good helpers requires a higher wage rate.
Wage Rate - turnover: The challenges of the job and the low wage rate combine to create a high-turnover industry. This is bad on multiple levels. Not only are most people with autism resistant to change, but it takes time, effort, and training before a new person develops a real relationship and understands each person’s communication style. Employee turnover can be a big setback for individuals with autism.
No Plan. The industry is predicated upon immediate care and long-term “existence” - just getting through each day, rather than engagement, enrichment, and living fulfilling lives.
You wouldn’t want to live there. Go visit 5 or 10 random group homes for adults with autism, then tell me which (if any) you would want to live in. I haven’t found one yet. And it’s difficult to justify / rationalize moving my non-verbal son into a place that I don’t think will allow him to be successful. (based on the homes I have seen; I have not seen every home out there.)
Project Better Life is different
We want to help more people lead more fulfilling lives, as independently as possible, with facilitation as needed - whatever that looks like.
Having autism, being nonverbal, or needing additional help to provide value and receive enrichment should not condemn someone to a life sentence of being ignored and sitting alone on a couch somewhere.
* These numbers are not, and cannot be, representative of a specific situation. There are a thousand variables which will go into budgeting and expenses, including the amounts provided for State assistance - which vary significantly based on dozens of variables surrounding the individual and their placement home. The purpose here is to illustrate the high-level gap in resources for this population, not to provide any details about a financial budget.