“Say What?!” Decoding the Jargon of the Disability Support Field
The Wall Street Journal ran a charming article on the rise of the use of Scottish dialect on Twitter. For those of you with a subscription, here is the link. For those of you without access, I provide this example, direct from Twitter, with my own attempt at translation.
Feart an feartie are yaised in ilkie dialect o the Scots leid. E.g. Fowk that cry Scots words slang are big fearties that are sweirt tae recognise Scots as a language in its ain richt.
“Feart” and “feartie” are used in every dialect of the Scots language. E. G., people that call Scots words “slang” are cowards that are reluctant to recognize Scots as a language in its own right.
Deciphering a twitter post, written in an unfamiliar dialect, is at best an amusing puzzle and at worst a mild frustration. Either way, the failure to complete the task has little bearing on your or your family’s happiness.
It’s a lot more relevant when key professionals in your own life insist on using what sounds like a distinct dialect, if not a whole other language, particularly when they are discussing processes and systems that are or will be integral to your family member with a disability, obtaining the supports s/he needs to live as independent and complete of a life as possible. Having worked in the field of disability-related direct support as well as in my current role as an advisor to families that are planning the future for their member with a disability, I am fairly fluent in the jargon employed in the industry. Since most of my readers are in Illinois, I’ll identify and define below some of the most common acronyms and abbreviations used in the disability service field in our state.
PUNS. Pronounced just as it looks, this acronym stands for “Prioritization of Urgency of Need for Services”. PUNS is essentially a database, in which every person with a developmental disability--a disability that started before the person’s age 22--who wants to register, can do so to indicate the types of service that s/he wants or will want. These may include residential, vocational, transportation. The person also indicates the time framework within, which s/he hopes to obtain them. PUNS is not an agency or a service; nor is it, strictly speaking, a waiting list, although it can appear to fulfill that function. People with disabilities are said to have been “pulled” from PUNS when they receive a letter, indicating that they have been approved to receive Medicaid waiver funding for one or more particular kinds of support service.
ISC. Individual Service Coordination agencies are gateway entities to developmental disability supports, primarily for adults, as many children’s services run through their school districts. Each one of this kind of agency has a geographical territory. Your family member should go to her/his appropriate ISC to register in PUNS and to update that registration each year. The ISC and its individual agents are meant to be advocates for the individuals with disabilities first and their families second. They are not meant to represent any provider, government department or funding agency. ISC’s provide Pre-Admission Screening (PAS) when an individual, whether in PUNS or not, needs to make a case to receive services. They also provide Individual Service and Support Advocacy (ISSA) when the person is currently receiving services. As a result, ISCs are sometimes referred to as “PAS” or “ISSA” agencies.
DHS. The Department of Human Services is the branch of the Illinois Government that approves and monitors the provider agencies and funding streams that provide support for people with disabilities in the state. The Department of Healthcare and Family Services (HFS), another Illinois Government entity, is technically the administering agency for the majority of disability service programs that are funded through Medicaid via various Medicaid waivers. However, HFS has delegated the practical day-to-day running of the Waivers to DHS.
ORS, DORS, DRS or Voc. Rehab. You can google any one of these acronyms or abbreviations, and it will take you to the same place, which is the website for the Division of Vocational Rehabilitation within the Department of Human Services. DRS operates one of the Home and Community-Based Services (HCBS) Waivers that is referred to as the Home Services Waiver, which is a bit misleading, since HCBS is actually a smaller part of the larger Home Service Program. The Home Services Waiver is primarily used by people with physical disabilities or brain injuries, especially those whose disability started after their age of 22.
DHS-DD. The Developmental Disability Division of the Department of Human Services is responsible for the services providers who support people with, specifically, Developmental Disabilities. They manage all the above waivers that are associated with developmental disabilities, which are defined as disabilities that start before that person reaches the age of 22.
HCBS Waivers. The Home and Community Based Service Waivers, sometimes called “1915” Waivers, since they are authorized under Section 1915 of the Social Security Act, are programs under which Illinois has permission to use Medicaid Funds to support people with various kinds of disabilities (as well as seniors) to live in the community, rather than in nursing facilities. Illinois has these programs: 1) The Children and Young Adult with Developmental Disabilities Support Waiver, 2) The Children and Young Adult with Developmental Disabilities Residential Waiver, 3) The People Who Are Medically Fragile/Technology Dependent, 4) The Persons with Disabilities Waiver, 5) The Persons with Brain Injuries, 6) The Adults with Developmental Disabilities, 7) The Persons who are Elderly Waiver, 8) The Persons with HIV or AIDS Waiver and 9) The Supported Living Waiver.
Home-Based Waiver. Distinct from the home services waiver described above, the home-based waiver for children is a monthly budget, equal to two times the maximum Supplemental Security Income (SSI) monthly award for the current year. The adult waiver is a monthly budget, equal to three times the maximum. For 2020, the respective home-based wavier amounts will be $1,566/month for children and $2,349/month for adults. The person with a disability, assisted by her/his family along with a provider agency decides how to use the budget to pay for various kinds of services they need, while continuing to live on her/his own or in the family home. Adults receiving the home-based wavier may elect to have themselves or one of their family members act as an employer to hire another family member as a support worker.
CILA. Community Integrated Living Arrangement refers to the type of waiver funding, rather than a type of physical structure. However, in common industry parlance, the term is often used to mean a “group home” as in “The ABC Agency operates twenty CILAs”, or “a new housemate moved into my son’s CILA”. People with disabilities, who live in what most of us think of as group homes, in which four to eight unrelated adults live together in a single family house and support staff come in and out on shifts, typically have “24-hour” CILA funding which, just as the name suggests, means that the home in which they live has at least one staff person working at any given time. Providers can also request “Two-” or even “One-person” CILA funding for people that need either more support or less housemates. “Family” CILA is an award of up to 24-hour support that the person can use to hire workers to come into her or his own home or the family’s home. There is also “intermittent” CILA funding, which is generally the type allocated to people who are more independent. These people may have an apartment on their own or with others, but staff people only available some hours of the day and/or days of the week.
If you have a family member with a disability, you have to help her/him go to the relevant ISC to register her/him in PUNS and periodically update the data. When the time comes, you will use the ISC’s PAS function to submit a packet of information to DHS-DRS if you have something other than a developmental disability or to DHS-DD if you have a developmental disability to apply for an HCBS waiver. For the former, you may receive funding for a certain number of HSP hours. For the latter, you may be approved to receive the home-based Waiver or a CILA Wavier of one or another kind. Once the service has started, the ISC will monitor how well its working through their ISSA function. By that time, you will not only be speaking fluent disability-support jargonese but may even be well-versed in the Scottish dialect.