Housing Options for People with Disabilities in Illinois

Walking Through the Process...

Step 1- Create the Vision

While the first thought that comes to mind when thinking of the individual living away from home is typically, ‘Where will they live?’,  this comes from a belief that the individual will need to find and then fit into a home setting that already exists.  Leading with, ‘What will they need to live their best life?’, encourages the individual, family, and loved ones to begin thinking with a person-centered approach to independent living. 

Developing a vision for what the individual’s day-to-day life might look like and the amenities in the home they would need to be appropriately supported can be a guiding idea that continues to be molded as an individual shows increased interest in moving outside of the family home.   

Identifying a specific age or time when most individuals are interested in moving into the community is challenging because an individual will feel ready in their own time and, unfortunately, they may need to move into the community before they are ready, if family and loved ones are no longer able to provide the level of care and meet the specific needs.   While the thought of preparing for possible tragedy can be mentally and emotionally uncomfortable, knowing what housing options are available can reduce a layer of stress.  

Looking at housing options broadly, there are two paths- Building and Established.  As indicated by the tenses of those names, Building means to actively take the steps to create a home environment tailored to the individual and their needs and preferences.  Whereas Established means that a home setting already exists, and the individual would compare their needs and preferences to existing options to find a good fit.  As with any two paths there are pros and cons, and these are described below.  While ‘Building’ and ’Established’ are not commonly used in the adult services or housing options world, these two overarching labels can help those who are beginning their journey into housing understand the array of options that exist.   

Starting with what is typically thought of as the only housing option, Community Integrated Living Arrangements (CILAs) will be reviewed under Established.  

Established

As the name suggests, Established homes are homes that have already been built, include staff and most likely, agency programming, so a new potential tenant would be coming into an environment with day-to-day operations already in place.  

CILAs:

Community Integrated Living Arrangements, or CILAs, are often referred to as Group homes because a small group of 8 or less individuals, all with developmental disabilities, live under one roof with the supervision of agency staff.  CILAs are operated by an agency provider and must follow specific state guidelines.  

There are different types of housing CILAs (DHS website source):

• 24-hour CILA- Group home
• 24-hour CILA- Family home
• Intermittent CILA
• Family CILA
• Community Living Facility

A full definition of each option can be found HERE.

When determining the type of CILA, specifically 24-hour vs Intermittent, the individual will be assessed on their level of need and be given a score.  This score determines the appropriate number of hours to meet their needs.  

Immediate Care Facilities, or ICF, is a residential option for individuals who have a higher level of care needs.  A description of an ICF and eligibility can be found HERE.   The care provided for this housing option is typically covered by Medicaid.  A list of providers can be found HERE. 

An agency can accept a potential resident into a group home and intermittent CILAs as openings become available.  Given a potential resident’s preferred zip codes, sudden placements for crisis situations, and individual profile of needs, interests, and abilities, the timeline for placement is harder to estimate.    CILA agencies are equally looking for a good fit for potential residents against their home inventory and current residents and will take into consideration gender, age, interests, accessibility needs, mental, behavioral, and emotional needs, and levels of independence, among others.   Once in a CILA, if the resident is no longer a good fit, their access to the CILA may be terminated.  

Individuals using Medicaid waiver Home and Community Based Services funding, aka PUNS funding, who live in a CILA do have rights (and HERE).   

For individuals who live in a CILA, the agency will assist in applying for SSI, if the individual doesn’t already receive this benefit, and will become the Representative Payee as they are now providing the basic needs.  The individual will be left with a small amount each month, about $60, for personal spending.  

CILAs, which are typically funded by the Home and Community Based Services Medicaid Waiver, aka PUNS funding, are now being held to a set of additional guidelines referred to as the HCBS Settings Rule, as of March 2023.  Organizations within Illinois partnered with others, including the Institute on Public Policy for People with Disabilities, to become an example as leaders worked to develop an accessible playbook to use across the country.  An easy-to-read template of a residency agreement explaining how the Settings Rule increased opportunity for residents can be found HERE.

Supportive Housing:

Supportive housing marries a smaller home environment, such as a 1-bedroom apartment, with personalized, self-initiated support within predictable parameters.  The foundation of supportive housing is offering a supportive living program on-site for easy access and setting rent at 30% of the individual’s income, while maintaining a more traditional renter/landlord relationship.  

While supportive housing is slowly becoming a more familiar housing option for individuals with disabilities and mental health needs, it is primarily known for serving those who are at risk of homelessness and/or substance abuse.  There are supportive housing apartment buildings in operation within the state of Illinois that present like standard apartment buildings.  

• More info about the basics of supportive housing can be found HERE and HERE.  
• Updates specific to Illinois, including new building initiatives, can be found HERE.  
• A workbook about supportive housing created by the Illinois Council on Developmental Disabilities specifically for families and individuals with intellectual and developmental disabilities can be found HERE. 
• An overview of an initiative to open a supportive housing development in neighboring Wisconsin can be found HERE.  

Details related to whether a home setting is a best fit for an individual will be covered in Step 3- Finding a Home.

Building

As the name suggests, Building options are homes that are not currently built or specifically designated as a low income, group home, or the like for an individual with a disability and a new potential tenant would take the initiative to create an environment that best functions for them and possible others.  The term ‘alternative housing’ also refers to housing options other than CILAs.  

Building Options/Alternative Housing Examples:

• Rent or buy a publicly available apartment/home as a traditional tenant/owner, bringing in personalized support
• Designate a portion of a family home, such as a separate in-law suite or pool house that’s fully equipped, as a Family CILA living arrangement 
• Share a home with a senior citizen where care and support is offered/given interdependently
• Buy a publicly available home and modify the structure to meet the standards for a CILA customized to a specific group of individuals
• Houses/Complexes with rooms where a staff member lives on property and provides support on a part time basis as they work primarily outside the building 
• Apartment building or complex where all basic amenities, grocery store, restaurant, laundromat, bank, gym, etc., are on property/within walking distance and intended for residents to access without the demand for transportation
• Develop land for a new building specifically for low income and/or individuals with disabilities

There are other possible Building housing options other than those listed above.  

For some of the options listed above, a family and individual may connect with an agency and, potentially, other non-profits, organizations, businesses, and local government to create and/or develop the housing.   Therefore, the steps to create the vision are a larger group effort.  

As listed above, Building options can include working with an agency to create a CILA that doesn’t already exist.   Therefore, a CILA does not only have to be an Established option, but it can also be found or constructed with the support of the individual, their family,  and loved ones.  Additional information about the process for creating a CILA can be found HERE. 

As with any new home development endeavor, this option takes time and attention and the individual, their family, and loved ones need to have the capacity and willingness to take on this all-encompassing task.  Whether building from the ground up or shopping real estate properties in different neighborhoods, the investment of one’s time and energy into home personalization should be taken into consideration, especially if everyone feels that this option would best support the individual and family’s ideal vision.   

Due to the wide variety of Building options, timelines for placement into the home will vary greatly.  Accessing a traditional apartment for rent and developing a schedule for support may take just a few weeks, whereas building an entire 30-unit development with local amenities within walking distance will take years and years.   

Details related to whether a home is a best fit for an individual will be covered in Step 3 Finding a Home.

To be clear, there may be alternative options within the individual’s local area that may have been Built by another local family or organization that may meet their needs.  While these options are a mix of the two options, like an ‘Established home Built by others’, they are few and far between in Illinois.   Learning about these options will likely come for connecting with local agencies, organizations, and fellow families, which is covered more in-depth in Step 3- Finding a Home.

While it is natural to believe that one path would be better than another, these options should be viewed in another way.   An individual may be just as happy, comfortable, supported, and safe in an Established home as they would be in a Built home.   Leading with developing the vision and then finding the housing option that will best meet that end goal will help keep the process person centered.    

Digesting and reflecting on the two paths can help in crafting the ideal vision for the individual’s future housing.  As with anyone who moves away from their family home, their day to day and, in this case, provided care will be different.   While easier said than accepted, different does not always equal bad or wrong.  

Gathering feedback about housing needs from those who know the individual best can help in developing the best, most ideal vision for housing.  This also goes without saying, the individual should also be aware of these options and have a voice for what they feel would contribute to an ideal life and home environment.  This input should carry great weight to those who will be leading the process. 

Step 2- Identify a Funding Source

Leading with the adage, ‘Where there is a will, there is a way,’ identifying possible funding options to pay for the ideal vision is the next step.  

Potential Funding Sources:

• Personal savings
• Loan
• Waiver (Medicaid/PUNS)
• Housing vouchers
• Grants
• Donations (Ex- from an agency or crowdsourcing)
• Agency funding
• Trust

If the most appropriate housing option includes partnering with an agency to Build, then they may have access to other funding, donation, and/or grant opportunities to support the financial need.   

If the plan is to use HCBS waiver, aka PUNS funding, as the main source of funding for housing then using the 60 month wait time to create and draft the vision would be an appropriate use of time.  If the individual is pulled from the PUNS waitlist and isn’t ready to live in the community or the dream hasn’t been fully developed, the individual can access Home Based funding and then initiate a request for CILA funding when they and/or their family is ready.  

For individuals who are on the PUNS waiting list and curious about when they will be funded, sending an email to the state’s automated system can provide an estimated pull date, which can help with planning.  Send an email using the information below and expect an automated response within 24 hours.   An email can be sent every 6 months to track updates to the timeline. 

Email- dhs.ddd.puns@illinois.gov 

Subject- Pulled from PUNS list

Body of the email- Full name, birthdate, ‘When will I be pulled for funding?’

The individual will receive 1 of 2 automated replies.

Reply 1:

Reply- “We have received your request for information regarding the PUNS list. Based on the current list, we anticipate your selection after the (Month) of 20##.”

Great! The individual is on the list and has an estimated pull date. Keep updating the profile yearly and alert your local office if anything about the family situation changes.

Reply 2:

Reply- “We do not find a person by this name in the database.”

The individual is NOT on the PUNS list and, therefore, cannot be pulled for funding.  Contact the local office to enroll (or re-enroll) the individual on the PUNS list.

Step 3- Finding a Home

Whether going the Established or Building route, finding just the right home, building, or plot of land is the foundation for a successful community living experience.   As with trying to find any space to become a home, this step will require thoughtful consideration and forward thinking.  

Taking action by gathering information and possible options that could be the right fit is the next step.   Start by having conversations to confirm feasibility of the ideal vision.   Conversations with those who can assist in validating the vision will likely cost nothing but time on the front end and this time spent communicating with the right people may save lots of time and money on the back end.  

On a similar note, simply sharing with others the desire to find the right housing fit can draw other potential parties into the process and increase accountability toward achieving the goal.  

One website to access is ILHousingSearch where individuals can search by location and add filters, such as Income based rent, Accessibility features, Section 8, and Income restrictive, to see what is available in desired locations.   If going the Building route, other websites like Domu, Craigslist Apartments, Apartments.com, Zillow, RedFin, and local realty agencies can offer homes and apartments for rent or purchase.  

While an individual will have a unique set of home needs to both feel and be appropriately supported, comfortable, and safe, below are things to consider when beginning a home search. 

General Home Considerations:

• Look beyond the walls at what the building, neighborhood, and community offer and if those features would benefit the individual
• How safe, accepting, and welcoming is the neighborhood, including safety along frequently used routes, such as the walking path to the grocery store or driving route to work?
• Are there accessible sidewalks that would meet mobility needs?
• How far and accessible, either by walking, driving, or public transportation, are community needs, including doctor and medical services, banks, grocery store, fitness center, recreation center, parks, laundromat, restaurants and cafes, post office, outdoor space, places of worship, and preferred hobbies?
• Confirm address boundaries to take advantage of preferred public transportation supports, educational or training opportunities, or recreational programming

Established:

• A typical ‘day in the life’ schedule in the home
• The age range and interests of the current residents in the home of interest or CILA residents in general
• Flexibility and autonomy for individuals to create their own schedule, including requirements around attendance at agency-related day programming
• The protocol for families who want to reach out to home staff with a question, compliment, or concern
• CILA staff training and rate of turnover within a home
• Distance from family, family home, and loved ones
• The Rhode Island Statewide Quality Consortium offers a list of questions for prospective CILAs 
• The Illinois Parents of Adults with Developmental Disabilities Unite offers a list of questions for prospective CILAs (see 4th link- Questions and Answers for Interviewing CILAs)

Building:

• Vetting potential roommates to determine best fit
• Autonomy for the individual or each roommate to create their own schedule and the staff needs to meet those schedules throughout the week and weekend, including holidays
• Find, hire, schedule, and pay providers to meet the unique needs of the individual or each roommate
• Hire, train, review, support, and promote staff
• The protocol for families who want to reach out to home staff with a question, compliment, or concern
• Expectations of the individual, roommates, or staff to complete household tasks, such as shopping for groceries, preparing meals, cleaning, tending to mail/deliveries, yardwork, general home maintenance, etc.
• Advocacy level of the individual or each roommate to identify a need for help and level of initiation
• Safety within and around the property, such as accessing remote monitoring or two-way video calls with security, and contacting emergency services when necessary
• Transportation needs and options for the individual or each roommate
• Distance from family, family home, and loved ones
• Zoning, Homeowner Association (HOA) fees, required insurance, inspection schedule, and yearly taxes associated with the home

There may be additional housing needs to consider that are specific to the individual or preferred home option than those listed above. 

Step 4- Moving & Living

Moving can come with feelings of excitement, anxiety, and fear, as many day-to-day routines and demands will change.  Preparing the individual to be ready for a move can begin at any time.   The timing of the advanced notice of a move should be tailored to the individual and their needs.  

While not a fully comprehensive list, below is a list of changes to anticipate as an individual shifts from living in the family home to a home in the community.

Possible Changes to Anticipate:

• New day-to-day routines
• Increased independence for those who have the skill, i.e., washing their own dishes if the individual is capable of washing, drying, and putting away
• Less spendable income, especially if SSI (Supplemental Security Income) is reduced moving into a CILA
• Available space to live and move about, either more or less space
• Same activity with slight differences, i.e., grocery shop at the same chain store but the layout is different
• New furnishings, i.e., finding new favorite seat on the couch 
• Learning new systems, i.e., taking public transportation or accessing a new stop
• Sharing space and amenities, i.e., may need to wait for the bathroom or compromise on the volume of the music played in the living room
• Adjustment to schedule, i.e., may need to wake earlier to accommodate a new schedule
• Change in emotions with an influx in new routines, expectations, and/or demands
• Accessing new programming provided through the agency
• Increased advocacy for needs to be met
• Welcoming new people, roommates and/or staff and/or providers, into a new, personal space
• Sharing available resources, i.e., common spaces in an apartment building
• Navigating differences with roommates/staff and observing the emotions of others

With the right housing fit, these changes, albeit overwhelming and challenging, will hopefully be temporary.  Therefore, anticipated difficulty shouldn't be hinder one's access to community living.   Feeling comfortable and confident in a new space will come with time.  

Depending on the individual’s needs, some may benefit from previewing the space, either in person or from pictures, before moving.   Also, some housing options, like a group home CILA, may have restrictions on how early the individual can visit their family/home after they move in, with the goal of quickly establishing the feeling of home in the new setting.  

Gradually changing or increasing independence while at home in anticipation of a move may help ease the transition when the time comes to move, hence the benefit to starting increasing independence and flexibility early.   

The list above has an overarching theme of flexibility and advocacy.   Even for individuals who don’t list these characteristics among their strengths, being cognizant of the change may help ease the transition.   If the housing is the right fit, then the individual will learn to love their new life and environment in time.