Buck Up! Take the First Step Into the Disability Services Maze.

February 28, 2019

One of the minor characters in the recent Sony Pictures animated film Peter Rabbit is a buck.  As with the other anthropomorphic animals that make up the cast, the large male deer gets into a lot of mischief and wreaks havoc with the McGregor’s garden and home.  When Mr. McGregor returns home sudden, the other culprits scamper away before they can be discovered, but the buck freezes in front of the oncoming McGregor truck with its headlights on, stares back in a trance and mutters “Headlights, heeeeaaaadliiiiiights.”  There is a convoluted maze of systems, benefits, services (not to be confused with benefits), and service providers that must be researched, evaluated and coordinated to provide a well-supported life for your family member with a disability.  The seeming impossibility of knowing where to start or which way to go can immobilize you like a deer caught in the headlights.

In Illinois, the place to start is the state’s Prioritization of Urgency of Need for Services or “PUNS” database.  Until recently, the state had no way of recording how many people with developmental disabilities needed services but did not already have them, what exact services they needed, and how urgent the need was.  More importantly, perhaps, self-advocates, family advocates, and advocacy bodies had no evidence-based way to discuss with politicians and other decision-makers the enormous gap between the capacity of and the demand for disability-support services in all categories and for all age groups.  PUNS is the state’s attempt to address that deficit.  While there are still kinks, the database has become an important tool for organizing and parceling out services, particularly for people with disabilities over the age of 21, who have left behind the world of school-based supports.

 

To enroll your family member in PUNS, you must arrange an intake meeting with your Individual Support Coordination (ISC) agency.  Which agency provides ISC services for you or your family member is determined by your geographical location.  You can find yours here.  During the intake meeting, you first provide the basic data about the person with a disability including her/his diagnosis/es and which one is primary if there is more than one diagnosis.  You need to provide the date of onset, because a disability that began before the person’s 22 birthday is considered “developmental” and thus within the PUNS’ responsibility.  Generally, to have a developmental disability significant enough to register in PUNS, the person needs to have a functional IQ below 70 or have either autism or cerebral palsy.  You will also need to provide data that defines the extent of the disability, such as an Inventory for Client and Agency Planning (ICAP) and/or a Scales of Independent Behavior (SIB) score, both of which put a numerical value on a person’s capacity across Motor, Social and Communication, Personal Living, and Community Living skills.

 

You then go on to answer questions about what kinds of supports your family member will need along with why and when.  By far the most important category is supported living and questions like the following: 

  • Does the person need immediate support to stay in her/his own home?  Short-term or long-term?

  • Does the caregiver need immediate support to keep the family member at home?  Short-term or long-term?

  • Is the person living in a setting of suspected abuse or neglect?

  • Has the caregiver given up her/his responsibility?

  • Is the person’s current placement excessively expensive; for example, a hospital or a nursing home?

  • Has the person’s health or behaviors deteriorated so that additional supports are necessary?

  • Has the person recently aged out of a residential school and/or a children’s disability support Medicaid Waiver?  Or will they soon do so?

  • Has the caregiver’s health or financial situation deteriorated recently, or has one caregiver died?

Or, is the situation for your family member less serious, but also noteworthy, such as:

  • Does he person does not currently need supports, but will if something happens to the caregiver?

  • Is the person in a large congregate setting but wants to move to a small setting?

  • Is the person dissatisfied with her/his current residential support?

  • Will the person leave a residential school or age off a children’s Waiver(capitalized?) up to five years in the future?

In addition to the important questions around living arrangements and supports, the PUNS provides an opportunity to record the person’s current and future needs for vocational and transportation services, various therapies, and also behavioral supports.  It also catalogues what services the person is currently receiving.  Providing lots of information and answering lots of questions explains how one gets on, or into, PUNS.  But what about getting off?  After all, the purpose of getting on a waiting list is, eventually, to end your waiting and get the services. 

 

There are two sets of criteria through which people are invited off or “pulled” from PUNS.  The first is, logically enough, emergency need.  If you are your family member’s primary caregiver and you develop significant impairments or die, then your family member is in immediate need of a home and supports, and the Department of Human Services Developmental Disability Division has 72 hours to find them this new place to live.  This is similarly the case, if the person is in immediate danger of abuse or neglect or homelessness due to significant medical or behavioral support requirements.  Until 2018, people on PUNS were classified as having “emergency”, “critical” or “planning” needs for services.  This first set of criteria selected people from the “emergency” category.  By mid-2018, the DHS/DD decided that “emergency” and “critical” were sometimes too hard to distinguish, and so they reduced the categories to two: ”seeking services” and “planning for services”.
 

In addition to handling emergency situations, DHS/DD is also under obligation from consent decrees to remove people from the database at a “reasonable pace”.  The dissent decrees were filed in the not-so- distant past, when way too few people with disabilities received the necessary services, and those that did received them were primarily in inappropriately large institutional settings.  According a recent summary posted on the IL DHS website here:, more than 9,000 people are seeking out-of-home residential support within 5 years or less, nearly 9,000 are seeking support to work at home or outside in the same period, and more than 20,000 are seeking transportation services as well.  More than 15,000 are seeking broadly described “personal services”, which may overlap with other categories.  Certainly, PUNS and the consent decrees have done something to rectify the situation, but there is still a long way to go.  Nevertheless, PUNS is still the first step in meeting your family member’s needs.  No joke.  In the film, Peter Rabbit jolts the buck out of his trance and into action. Your ISC agent can help you complete PUNS and take a leap forward towards safety for your family member with a disability.

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