Shortly after we bought our 38’ ketch Arabella, Steve and I became licensed captains. The plan was to support ourselves by living as self sufficiently as possible, writing best-selling books (the royalties from which would be dropped to us by helicopter on whatever ocean we called home at the moment) and billing rich people for the pleasure of joining us aboard our home for intermittent charters.
The royalties came from magazine articles, small and infrequent enough that General Delivery was adequate; but we did, in fact, build a bit of a charter business. As enviable as this sounds, make no mistake: the charter business is a service industry, and therefore involves a lot of grunt work like grocery shopping, cooking, cleaning, laundry, and maintenance. If you’re lucky, you get to do all that in the sunshine. If you’re not, you do it in the rain, because it still needs to get done before, during and after the charter.
That said, we met some interesting rich people, many of whom drove really nice cars. My favorite was the red Mercedes 350 SL the doctor’s wife drove from California to Marblehead over the summer, and then subsequently to the dock where Arabella was berthed. I’d look great in a car like that I told Steve—maybe even more so today, with the classic maturity I’m working on as I age.
A red Mercedes 350 SL, Jimmy Choo boots, and one teeny weeny 4 season bungalow overlooking the Gulf of Maine from a rocky elevation are all things I’d love to have, but we simply can’t afford. We need to live within our means, or “act our wage” as Dave Ramsey puts it.
According to a study funded by Autism Speaks,[1] the lifetime cost to care for a person with autism who also has an intellectual disability is $2.3 million, and $1.4 million for a person with ASD and no intellectual disability. Intellectual disabilities affect around 40 percent of those with autism.
Autism’s cost to the nation per year reached 137 billion in 2012.[2] $137 billion per year. Billion. Per year. And that’s based upon an autism prevalence of 1 in 110, the figure available at the time of the study. Today that prevalence is 1 in 68.
To put that number into perspective, $137 billion per year exceeds the entire gross domestic product (GDP) of 139 different countries.[3], [4]
“According to . . . research, the majority of costs related to autism are incurred during adulthood, principally due to the cost of residential care, as well as underemployment and unemployment,”[5] Autism Speaks says.
The fact is, we can’t afford autism. Okay, okay, we could afford autism if our priorities were different and if we beat our swords into plowshares.[6] But I don’t see that happening in my lifetime, do you?
So that’s why I have hope for the SIS, the Supports Intensity Scale. Published by the American Association on Intellectual and Developmental Disabilities (AAIDD), the SIS is an assessment that evaluates the “practical support requirements of a person with an intellectual disability.”
“The SIS measures support requirements in 57 life activities and 28 behavioral and medical areas. The assessment is done through an interview with the consumer, and those who know the person well.”
“SIS measures support needs in the areas of home living, community living, lifelong learning, employment, health and safety, social activities, and protection and advocacy. The Scale ranks each activity according to frequency (none, at least once a month), amount (none, less than 30 minutes), and type of support (monitoring, verbal gesturing). Finally, a Supports Intensity Level is determined based on the Total Support Needs Index, which is a standard score generated from scores on all the items tested by the Scale.”
That’s all the assessment does: it generates a standard score which then falls into a Supports Intensity level.
What Policymakers do with that score/Supports Intensity Scale, ah, well, that’s where the angst comes in. But stay with me on the assessment part for a bit longer.
Good treatment is driven by assessment. We don’t guess, we don’t wish, we don’t copy, we assess. Based upon assessment, we develop goals and objectives.
Good resource allocation is driven by assessment. We don’t build a bowling alley where four already exist; we don’t build million dollar homes in $100,000 neighborhoods. We don’t roast a turkey for 10 hours when four will do.
The folks who bring the SIS to their state say their intention is to be sure that everyone gets what they need: no more, and no less. The SIS is essential, they say, because in some cases an individual with modest needs receives six figure taxpayer support; and in other cases, individuals with dire needs receive precious little.
Okay so let’s say you buy into the essential need for assessment. And for purposes of this discussion, let’s say you agree the SIS is that assessment, and your optimistic self says the SIS is conducted competently, by well-trained staff. (Stay with me!) A score results in a level of need, 1 – 5, with 5 representing the most need.[7] Based upon that level, the individual is allocated a budget and, within certain guidelines, that budget is spent on the supports of most value to the individual and/or guardians.
So the question becomes, is that budget enough? Enough for what? Ideally, enough for a safe, healthy life of inclusion in our communities to the greatest extent possible. For individuals who have extraordinary medical and/or behavioral needs they feel were not captured on the core SIS, additional SIS assessment is available; and if that still does not yield sufficient support, due process can be undertaken.
In general, Policymakers use the SIS score to allocate State-managed funds, such as Medicaid. In addition, our loved ones may be eligible for social security, HUD housing vouchers, subsidized housing, voc rehab, and other benefits.
So here’s my recommendation: I said it weeks ago, and I’ll say it again. It all starts with having a good vision of what kind of a life you and your loved one envision, and what kind of supports are needed to make that happen. Then, domain by domain, block by block, you tinker with that Rubik’s cube until everything lines up.
Here’s how to start:
- There are 168 hours in a week. Block out the entire week, hour by hour.
- Fill in each block with where your loved one will be, in your vision, doing what.
- Make the connections to make it happen, most especially with a case manager specializing in adult services.
If you need help, contact me at Lperry@transition2adulthood.com, (207) 841 – 7491.
One thing to consider: are our providers ready to offer new service options based upon unique need? Are they ready to “wrap” just the right services around the individual? Some are, some aren’t. One thing is sure–more innovation is needed to do the most with what we have.
Innovators Wanted: If you have an idea, let me know. Let’s build it.
Resources on the SIS:
Developmental Service: Supporting Individual Success: A website describing the goals of using the SIS in Maine; also has links to documents associated with the due diligence and adoption process, including proposed rates.
Maine Parent Coalition Office of Aging and Disabilities Services (OADS) presentation: http://www.maineparentcoalition.org/uploads/2/6/1/1/26115022/sis_initiative_powerpoint_january_2014.pdf
Section 21/29 Waiver Rate-Setting Initiative, Proposed Rate Models, July 22, 2014: Proposed rates by level.
Supporting Individual Success: A Family Friendly overview of the SIS and its intended use in Maine http://www.maine.gov/dhhs/oads/disability/ds/sis/documents/IndFamFriendly.pdf
Maine Policies and Procedures for the SIS: Includes general operational guidelines, quality assurance protocols and grievance procedures. http://www.maine.gov/dhhs/oads/disability/ds/sis/documents/FinalDraft-Stakeholder7.23.14.pdf
[1] “Estimating the Economic Costs of Autism:” http://www.autismspeaks.org/science/grants/estimating-economic-costs-autism
[2] http://www.autismspeaks.org/science/science-news/autism%E2%80%99s-costs-nation-reach-137-billion-year
[3] A comparison made by Autism Speaks, citing http://data.worldbank.org/data-catalog/GDP-ranking-table
[4] Gross Domestic Product is the monetary value of all the finished goods and services produced within a country’s borders in a specific time period, usually calculated on an annual basis: https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=define%20gdp
[5] http://www.autismspeaks.org/science/science-news/autism%E2%80%99s-costs-nation-reach-137-billion-year
[7] The number of levels across which scores are distributed is up to the users of the results (most often a state department serving individuals with intellectual disabilities.) For example, the Commonwealth of Virginia uses 7 levels.