CRAAG Findings and Solutions #2
Adult Supports Intensity Scale (SIS)
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This lengthy assessment is reprinted from CRAAG's February 20019 newsletter. It scratches the surface of the many concerns around Virginia's implementation and administration of the Adult
Supports Intensity Scale (SIS)
for people aged 16 and older. Virginia uses the SIS
exclusively
to assess the support needs and
set provider reimbursement rates for these waiver services:
- Community Engagement (BI, FIS, CL)
- Group Day Support (BI, FIS, CL)
- Independent Living Supports (BI)
- Supported Living Residential (FIS, CL)
- In Home Supports (FIS, CL)
- Sponsored Residential (CL)
- Group Home (CL)
Immediately following this article, you will find a touching Family Story from a local family. It shows how policies can have a devastating effect on families, such as this one. Their son struggles to find services following the SIS evaluation that erroneously resulted in a rating of Level 2/Tier 2.
For this article, CRAAG spoke to families about their SIS assessment experiences, and then reviewed their 17+ page long "
family friendly reports
" to get a sense of their loved ones' needs and preferences. We met, had phone interviews, or written correspondence with representatives of Department of Behavioral Health and Developmental Services (DBHDS), Department of Medical Assistance Services (DMAS), CA (formerly Commonwealth Autism), researchers at Virginia Commonwealth University (VCU) and University of Virginia (UVA), Region Ten staff, researcher at Human Services Research Institute (HSRI), and an attorney with the Legal Aid Justice Center (LAJC). We've also spoke with several adult service providers from Charlottesville and Richmond to understand their experiences. This exploration has been eye opening, to say the least.
According to the reports that families and providers receive, the SIS is “designed to assist in the service planning process for the individual, their parents, family members, and service providers. The profile information outlines the type and intensity of supports the individual would benefit from to participate and be successful in his or her community.
The SIS profile report is best applied in combination with person-centered planning to achieve the desired outcome in creating individual goals.”
This is not the way it is being used in Virginia.
When families and providers complain about the SIS scores, and such complaints are very common according to DBHDS, they should really be complaining about DBHDS's Level/Tier algorithm.
That's what we conclude after our research. This article explains why.
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The SIS started from a good place. The American Association of Intellectual and Developmental Disabilities (AAIDD), the world’s oldest and largest interdisciplinary organization of professionals concerned with intellectual and related disabilities, asked this question:
"what practical supports does a person with an intellectual disability need to live independently in the community?"
Finding no suitable tool to answer that question, the AAIDD designed a new one - the
Supports Intensity Scale (SIS)
.
The
AAIDD website
explains that the tool was developed "over a five-year period from 1998 to 2003 and normed with over 1,300 culturally diverse people with intellectual and developmental disabilities aged 16–72 in 33 states and two Canadian provinces." AAIDD is the publisher, copyright holder, and sole owner of the SIS that it began marketing in 2004. Today 25 states, including Virginia, plus the District of Columbia use the SIS.
The above two images, Part E Scoring and Rating Key and the edited SIS Scoring Form & Profile, are taken from an AAIDD online case study of Melvin Thurber, for
SIS
training
. The SIS gained traction in the disability world because of its paradigm-shifting approach to person-centered planning. No longer were a person's IQ and deficits in adaptive functioning the focus of an evaluation and planning. The SIS would focus on the individual's practical support needs in six Activities areas, and planning teams would use the SIS profile to individualize program planning rather than shoehorning people into generic programming options. Individuals would take advantage of the identified supports to build a life of their choosing in the community. By
supports,
they refer to a varied "array of resources and strategies, including individuals, money or tangible assets, assistive devices, or environments" that enable disabled people to live normal lives in regular community settings. Here are two overviews on the SIS tool from its maker, AAIDD:
2004 brochure
and
2008 brochure
.
Everyone participating in a SIS interview, except the interviewer, knows the target individual. The target individual is invited. The initial assessment is new to most of them. They assign a rating as if the person is fully engaged in an activity that most typically functioning adults would not need support for, and they themselves may not participate in. In Virginia, attendees are prohibited from recording, bringing notes, documents, or old SIS reports to the meeting. They rate each of 50+ activities from experience and from conjecture for: a) frequency; b) daily support time; and c) type of support. The scoring rules:
- This scale should be completed without regard to the services or supports currently provided or available.
- Scores should reflect the supports that would be necessary for this person to be successful in each activity.
- If an individual uses assistive technology, the person should be rated with said technology in place.
- Complete ALL items, even if the person is not currently performing a listed activity.
Ratings in the Medical and Behavioral support needs section are considered separately. The scores aren't represented in the final Support Needs Profile (i.e., activities A-F) below. SIS treats these medical/behavioral needs as overarching, that is they have a profound effect on any or all of the six target areas as indicated above. AAIDD/SIS encourages states to create
Supplemental Medical and Behavioral Needs Questions
, as Virginia has done
.
SIS considers a rating of 2 (Extensive Support) for
any item in either medical or behavioral
section a reason to complete the Supplemental Questions during the interview. Reviewers are encouraged to consider the: a) significance of the medical/behavior in regard to extra support, b) health and safety risks of not providing it; c) the occurrence (i.e., all or some environments) and and frequency; and, d) other needs.
The AAIDD
scoring guidelines
explain it this way: "The individual’s skill level, use of assistive technology, motivation, health, behavior, and safety/vulnerability must all be considered when determining ratings. People should be rated in accordance with their current status and functioning. For example, a person with low motivation, short attention span, low tolerance for learning, and limited cognitive ability will likely require high levels of supports to meet the standard of 'success' with many of the [Activity] items."
CRAAG has heard the following from families and providers who have participated in a SIS interview:
- Report it's hard to rate activities if the person doesn't currently engage in the activity.
- Wonder about the purpose of the SIS because when the scores come back no one explains what it all means, or even holds a meeting to develop a service plan using the SIS data.
- Report that they didn't know what to expect in the SIS interview.
- Report feeling "bullied" into minimizing the person's support needs (especially for medical and behavioral needs).
- Report being treated like they're trying to game the system.
- Call the interview intense and intimidating.
- Know vaguely that the SIS has significant consequences for the next 3 years because the system uses the scores to decide what to pay service providers, but have no clue how it works.
- Worry about holding on to the services they currently have because they personally know individuals who have lost services because of the SIS.
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Follow the Money
By 2007 Virginia began working with two healthcare consulting firms: Human Services Research Institute (HSRI) and Burns & Associates to advise the Commonwealth on a methodology ("resource allocation system") to use a portion of a person's SIS scores to identify their "support level" and the "provider's payment tier." Even if you're not familiar with how SIS scores are being used by 11+ states, including Virginia, to set rates for providers, you probably do realize that Virginia allocates insufficient financial resources to serve individuals with intellectual and developmental disabilities (or any other under-served populations). More than 12,000 individuals in need of waiver services are on a DD Waiver waiting list.
Virginia's "resource allocation system"/algorithm is actually fairly straightforward:
- Only the standard scores of three of six Activity scales (ABE in bold below) are factored into Virginia's algorithm. The six activities are: *A (Home Living), *B (Community Living), C (Lifelong Learning), D (Employment), *E (Health and Safety) and F (Social). Virginia's algorithm ignores the CDE Activity scales. Why include only three? Incidentally, the Social support needs are huge for many individuals on the autism spectrum, and that category isn't factored into Virginia's algorithm.
- Medical and behavioral supports are critical to SIS, but less so in Virginia's algorithm. Medical support needs scores of 7 and above and behavioral support needs scores of 11 and above have the biggest influence on the Level/Tier. Lower medical (between 0-6) and behavior supports scores (between 0-10) somewhat impact the Level/Tier, but not as much. According to a SIS Final Report, "any rating of 2 [and above] indicates an exceptional need with Medical conditions and/or Behaviors.” Neither the SIS nor the Virginia algorithm consider an individual's height, weight and overall strength. That is a very important factor in judging how much protection others need from a large and strong person with aggressive, sometimes violent, behaviors.
- Advocacy and Protection support needs are not factored into Virginia's algorithm. The algorithm ignores such factors as: a) advocating for self; b) making choices and decisions; c) protecting self from exploitation; d) exercising legal/civic responsibilities; e) belonging to and participating in self-advocacy/support organizations; f) obtaining legal services; and g) managing money and personal finances. All these support needs are very important to individuals on the autism spectrum as well as other vulnerable populations that are challenged with gullibility and poor decision making.
The DBHDS chart below explains the algorithm. Is the Level/Tier accurate for any given individual? The young man in the Family Story that follows this article, there is a disconnect between his Level/Tier and his actual behavior. And, he's not alone. Countless other families and providers are scratching their heads over their too-low levels.
Unfortunately, individuals who disagree with the SIS scores or Level/Tier designation cannot appeal, according to DBHDS's standard operating procedure. That does not seem fair. The appeal process should be expanded to allow challenges to the SIS scores and Level/Tier as well as complaints about feeling intimidated in the interview. Given the singular importance of the SIS in Virginia's DD system, the assessment and ratings should be able to
withstand an appeal from concerned families and providers.
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In closing, here is one adult autism service provider's very succinct explanation of the potential consequence of Virginia's algorithm on an individual:
"Providers are only concerned with providing the most effective, evidence-based, person-centered supports required to support the individual in the most integrated/inclusive setting, which is chosen by the individual and his/her family. If the individual’s behavior requires competently trained staff or increased supervision (1:1 staffing) due to behavioral or health and safety concerns, then we are ethically and professionally obligated to provide these supports. This higher level of support has increased costs, and a provider will likely refer the client to another provider if they cannot safely and reliably support the individual. For the provider, it’s all about the supports they feel the individual needs. If they cannot provide these supports (due to a cut in rates), then they have a tough choice to make: They can continue to provide the supports the individual needs and lose revenue (to the point of losing money and going out of business) or provide a lower level of supports and potentially putting the individual, their family, staff, or the community at risk. This is not a good position for anyone to be in. The fact that a family cannot appeal the score, they can only appeal the process, is a significant issue. The individual is the one who eventually suffers. They will have to wait 3 years until another SIS is conducted. Or, worse, they have to be hospitalized, arrested, injure themselves or someone else in order to have the state re-assess and reallocate resources."
Autism, the SIS, and Virginia's Algorithm
The appropriateness of the SIS for adults on the autism spectrum is a nagging concern for families and providers. AAIDD asserts that the SIS is valid for all individuals with intellectual and developmental disabilities, including autism, because these individuals were part of population that was "normed with the SIS." However, most of the AAIDD's writings refer to individuals with intellectual disabilities, and this makes us wonder.
"Q: Can SIS be used with other developmental disability (DD) populations?
A:
Yes. ... Today, policymakers and government officials typically refer to people with intellectual disability and related developmental disabilities (ID/DD) when discussing the population that is served by state ID/DD systems. This population shares a need for extraordinary supports in order to participate in life activities and experience life conditions that are valued by the vast majority of others in society. They are distinguished from people with a primary disability related to sensory issues (i.e., vision, hearing) and from people with a primary disability related to mental health issues. ... In every state there are many people who meet criteria for services from a state ID/DD system, but who do not meet diagnostic criteria associated with ID. The SIS is appropriate to use with such individuals
because the standardization sample on which the SIS was normed is representative of state ID/DD systems population
- that is, not everyone in the SIS standardization sample had a diagnosis of ID. ...
So although there are not specific norms for people with a primary diagnosis of autism (for the sake of example), SIS items are certainly applicable to assess the support needs of people with autism.
Moreover, one can compare the relative intensity of a person with autism’s support needs with those of the standardization sample. Of course, people with a primary disability diagnosis of autism, intellectual disability, or any other disability may have additional personal support needs; therefore, there is always a need to carefully consider each person’s unique needs and circumstances at the individual planning level
."
An autism researcher told CRAAG that
Bossaert et al.
(2009) is the only paper he's aware of that looks at use of the
"SIS with individuals who do not have an intellectual disability
."
According to Bossaert et al., the authors of the original SIS study have asked researchers to conduct studies of other target groups (i.e., autism, sensory, physical, traumatic brain injuries, etc.). So far no one has initiated a study of an autism target group. Bossaert et al. notes the "SIS
may
[emphasis added] present a relevant instrument [for autism] beyond the original target group." It needs to be studied.
Conclusion
A question from AAIDD's current FAQ page asks, "
Q
: A
re states using SIS for resource allocation?
A
: Yes, states using SIS as a funding model to set individualized budgets. To view the list of states using or in the process of using SIS for resource allocation provided by the
Human Service Resource Institute
,
please
click here
."
This is a clear endorsement of HSRI's work. It is not clear if the SIS
always
intended for this tool to be used in this way.
The SIS Final Report
says,
"SIS profile report is best applied in combination with person-centered planning to achieve the desired outcome in creating individual goals.” It's hard to understand why AAIDD would want its paradigm-shifting assessment tool to be associated with Virginia's (or any other states') questionable algorithm. It gives the SIS a bad reputation.
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Solutions
- Research the validity of using the SIS with an ASD target population.
- Change the appeal process to include resolution of disagreements over SIS scores and Levels/Tiers.
- Explore other ways to set rates for services providers, including identifying a more sensitive algorithm using SIS scores or using a different tool entirely.
- Explore best practices in other states, including how they are setting rates with the SIS and other tools.
- Publish and analyze the data on how the levels/tiers are working out across the Virginia: number of individuals in each Level/Tier, number of individuals with changes in levels/tiers, number of assessments and reassessments, aggregation of data by disability type, etc.
- Survey providers to understand the impact that the levels/tiers algorithm is having on their ability to safely serve clients, and how or if they use the SIS data for its intended purpose of individual program planning.
- Survey parents to find out what they think about their SIS experience.
- Offer regular trainings for families and providers on the significance of the SIS interview, and what to expect and how to effectively participate in a SIS interview.
February 6, 2019
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Family Story
CRAAG heard this story from the parents of a now 24 year old man with autism who grew up and still lives in a neighboring county. It is a story of their struggle for support services when DBHDS assigned him to Level 2/Tier 2 in 2016 and again in 2018. The Level/Tier determines the provider reimbursement rate. Level 2 is defined as:
“Moderate Support Needs: Individuals have modest or moderate support needs, but little to no need for medical and behavioral supports. They need more support than those in Level 1, but may have little no need for medical and behavioral supports.”
This young man is not a Level 2!
Diagnosed with autism at age 3, he was educated in his county school system, eventually transitioning to the regional Post High program. Mindful of his lifelong dependency and intense behavioral challenges, they were one of the first autism families in their county to qualify for a DD waiver. He was an active child, now man, who loves the outdoors, fishing and swimming. Built like a linebacker and strong from daily work outs, he might have played football, if not for the autism diagnosis.
He has many support needs. Transitions are particularly difficult. He has many triggers and a high need and respect for routine. In public, he needs help with etiquette and respecting the personal space of others. Power outages, changes in his daily schedule, new tasks at school or work can trigger potentially severe emotional outbursts. He may unintentionally harm people when he grabs and holds on to them. In a rage he might throw an object. One time things got out of control at his home and the police were called to restore order. He was suspended from the adult autism day services program twice because of the safety risks to the staff and other participants. Helped continuously to manage his sensory needs, anxiety, and temper, he is not left unattended. He makes hard and fast decisions without weighing the pros and cons, like a potentially life threatening decision not to use his C-pap to manage his sleep apnea.
On 1/15/16, the man was 21 years old and months away from making a big transition to an adult autism day services program in Charlottesville after his Post High graduation. The SIS interview that day was the first of two SIS assessments in 2.5 years. An early reassessment was done 8/30/18 due to a new medical concern, epilepsy.
Both SIS interviews were held at the family’s home. Everyone in attendance knew him well. The son was in the home throughout, but did not participate. In 2016, the parents provided a police report for the violent outburst at the family home. In 2018, providers and family spoke of two suspensions from the adult day program, increasing and severe emotional outbursts, assaults, and other behavioral needs at home and elsewhere. Service providers reported daily grabbing, pinching, and bruising others to the point of conferring pain and extensive support needs. Behaviors were escalating. Epilepsy was a new medical concern requiring extensive support.
Both the 2016 and 2018 SIS identified Medical and Behavioral support needs to be “extensive.” He had a Medical score of 2 in both years, and Behavioral score of 5 (2016) and 4 (2018). Inexplicably the SIS interviewer did not consider sleep apnea a problem in 2018 because the young man was not cooperating and using his C-pap. Another unexplained error was in his behavior score that actually dropped in 2018 while his outbursts were escalating and he was suspended twice from the adult day program.
His extensive behavioral support needs required the completion of the Supplemental SIS questions (A DBHDS policy). He was labeled "
Severe Community Safety Risk - Not Convicted."
- “Individual has not been found guilty of a crime related to these risks, but displays the same severe community safety risk as a person found guilty through the criminal justice system? Yes.”
- “The Individual's severe community safety risk to others requires a specially controlled home environment, direct supervision at home, and/or direct supervision in the community? Yes.”
- “The Individual has documented restrictions in place related to these risks, within the ISP Process? Yes.”
- “How many days per week is extensive support related to these risks required? 7.”
- “Approximately how many hours per day is extensive support related to these risks required? 3.”
The written answer to the last question is not true. Three hours refers to the number of hours he was permitted to attend the day program at the time of the SIS interview. Actually, he needs extensive ongoing behavioral support whenever he is awake at home and in the community.
Why would anyone identified as "S
evere Community Safety Risk – Not Convicted" b
e assigned to Level 2? It makes no sense. Such a Level assignment proves there is a disconnect between the SIS approach to medical and behavioral support needs and DBHDS’s algorithm. SIS writes “any rating of 2 indicates an
exceptional need
with Medical conditions and/or Behaviors.” DBHDS’s algorithm downplays the significance of behavior scores in the 4-6 range, while the SIS states that such a person has “exceptional needs.”
With regard to this young man, the SIS and DBHDS come to opposite conclusions. His family and providers know him as someone who cannot be managed in a group adult autism program because he needs 1:1 support and his Level 2/Tier 2 funding is too low for the provider keep him safe. He’s probably not eligible for the “customizable rate” because that program has two pages of hoops to jump through for those with a Levels 1-5.
The family believes some of the SIS ratings are erroneous because:
- The behavioral scores dropped between 2016 and 2018 in a period when his behavior was actually escalating.
- Sleep apnea was removed as a need in 2018 because he refused to use the C-pap. That could be described as a potentially life threatening behavior.
- There were procedural issues associated - final reports weren't received in a timely manner in 2016 and 2018.
- Whatever the cause, the Level 2 does not describe the young man correctly.
Unfortunately, individuals who disagree with the SIS scores or Level/Tier designation cannot appeal, according to DBHDS's standard operating procedure. That does not seem fair. The appeal process should be expanded to allow challenges to the SIS scores and levels/tiers as well as complaints about feeling intimidated in the interview. Given the singular importance of the SIS in Virginia's DD system, the assessment and ratings should be able to withstand an appeal from concerned families and providers.
Because of the incorrect Level/Tier assignment, too low Level/Tier assignment, and procedural issues, this family deserves a hearing.
February 6, 2019
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About CRAAG
CRAAG (Charlottesville Region Autism Action Group) is a parent-run advocacy group. Established in 2010 under the leadership of Commonwealth Autism (now CA), CRAAG serves Charlottesville, Albemarle, Greene, Fluvanna, Louisa, and Nelson. CRAAG’s mission is to advocate for individuals with autism and other developmental disabilities and their families. With a mailing list of 500+ parents and professionals, CRAAG is constantly monitoring autism and other developmental disability needs in our region.
- CRAAG partners with like-minded self advocates, parents, educators, public and private providers, including, CA, Region Ten CSB, Virginia Institute of Autism, Faison Center for Autism, WorkSource Enterprises, and the University of Virginia.
- We also rely on support from the Department of Aging and Rehabilitation (DARS), Piedmont Regional Education Program/Parent Resource Center, the Legal Aid Justice Center (LAJC), Department of Behavioral Health and Developmental Services (DBHDS), The ARC of the Piedmont, Charlottesville Parks and Recreation, and Blue Ridge Care Connection for Children.
While CRAAG is passionate about the broad spectrum of autism and developmental disabilities, active team members are largely “well-seasoned” parents of individuals who face lifelong challenges and range in age from transition to adult. Our highly motivated group is keenly focused on getting their family members positioned to thrive before they themselves can no longer directly advocate, care, and support them.
- CRAAG meets monthly in Charlottesville on the 4th Wednesday of the month from 10 AM - Noon on Region Ten’s Campus, Room 502A in the Administrative Building, 500 Old Lynchburg Road. Everyone is welcome.
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CRAAG | Serving Charlottesville, Albemarle, Fluvanna, Greene, Louisa, Nelson|
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