Living with dignity: Cedar Lake’s new Intermediate Care Facility increases quality of life for adults with developmental disabilities.

By Sally McMahon

In the spring of this year, Cedar Lake will build two four-bed ICF/IID (Intermediate Care Facilities for Individuals with Intellectual Disabilities) in the Sycamore Run neighborhood in Crestwood, Ky. These homes, the first of their kind in the state of Kentucky, will be the future of care and the new standard for the state of Kentucky. These homes will be able to offer, but are not limited to, nursing care, therapeutic services and behavior and psychological support. Most importantly, these facilities provide a home like yours and mine, located in a community, for their residents.

We’ve come a long way in regards to treatment and living options for persons with intellectual disabilities. Prior to 1971, facilities for the people with intellectual and developmental disabilities were financed solely by state, local and private funding. Many facilities were overcrowded with poor living conditions.

An amendment to the Social Security Act was passed and enacted into law that year, establishing special facilities financed with federal dollars. These facilities were called Intermediate Care Facilities for the Developmentally Disabled or ICFs/DD. Today, ICFs/DD form a long term care and training delivery system for individuals with intellectual and developmental disabilities (ID/DD).

For residents, quality of life has improved dramatically, as access and choice are key components of the ICF/DD program. Support and training programs now provide them with increased opportunities to live in more home-like, less restrictive settings and, to the extent possible, to become a more integral part of their communities.

Many individuals reside in ICFs/DD from youth until old age, which means that these facilities become a true home and staff become a second — and sometimes the only — family for some residents.

New Option in Kentucky

We spoke to Jason Squires, vice president of operations at Cedar Lake and project coordinator of Sycamore Run, as well as Edward Eiche, the architect of Sycamore Run, about this innovative group home.

Where does this ICF fall into the spectrum of care?  How is this different or better than the ends of the spectrum?

Jason Squires:  Traditionally, the ICF/IID model has been institutional in nature. This model, with the large congregate-living setting and high-intensity medical and behavioral care provided, usually set apart from a regular neighborhood, would represent one end of the spectrum. Folks supported in this setting typically have medical and/or behavioral needs on an intensity scale that cannot be met in a community setting.

On the other end would be completely independent living, in an apartment or house in a regular neighborhood, with intermittent staff support for things such as arranging transportation, appointments and paying bills. Folks supported in this setting typically do not have high-intensity needs.

It is important to note that the reason it’s this way is because of the Medicaid funding system in Kentucky. The ICF/IID license and reimbursement methodology allows us to provide any service the individual needs, regardless of intensity.

In the community, Medicaid doesn’t cover the high-intensity services, primarily because the reimbursement won’t cover the cost of providing the appropriate level of staff support needed for the individuals. So in Kentucky, what you mostly have is high-intensity people living in large facilities and low-intensity people living in the community.

The Sycamore Run model is a blend of the two ends of the spectrum. We will move eight individuals out of our large ICFs into the two four-bed SR homes, which will be licensed as ICF/IID.

These eight people with ICF-level needs will live in homes in a regular neighborhood. If not for this model, these folks wouldn’t have the opportunity to live in a regular neighborhood like you and me. This is the first of its kind in Kentucky, although it is being done in other states.  

Where does funding come from for this program?

JS: We are fundraising for the construction of the homes. Day-to-day expenses will be covered by Medicaid. Each person in the Sycamore Run homes will have a primary diagnosis of Intellectual or Developmental Disability (IDD). Today we support 87 in two large ICFs. We also support 104 people in our community residential settings and 74 in our day program.

What’s the primary diagnosis of residents and how many residents do you serve?

JS:  Each person in the Sycamore Run homes will have a primary diagnosis of Intellectual or Developmental Disability (IDD).  Today we support 87 in two large ICFs.  We also support 104 people in our community residential settings and 74 in our day program.

What sort of medical care is provided?

JS: In the ICF model, a medical director and physician assistant conduct weekly clinics and are on-call 24 hours a day, 365 days a year.  Multiple specialists conduct rotating clinics monthly or quarterly.  We also have 24 hour nursing care with RNs and LPNs and physical, occupational and speech therapy.

How did you incorporate Cedar Lake’s mission and patient profile in the design?

Edward Eiche: Our challenge was to design a four bedroom home to be licensed as a healthcare facility that would help Cedar Lake fulfill their mission to offer highly compassionate, capable care for people with intellectual and developmental disabilities so they may experience a life of abundant possibilities.

The vision for each Sycamore Run home is to function as a single-extended family home while also meeting life safety code requirements and the regulatory requirements for an Intermediate Care Facility for Individuals with Developmental Disabilities. The design of each home as four-bedroom single story open floor plan gives the individuals the opportunity to experience living in their own home while also having their needs met in the areas of nursing care, psychology, therapy, nutrition and other disciplines. The Sycamore Run concept presents an innovative opportunity to provide services to individuals with disabilities that heretofore has not been an option in the state of Kentucky.

Over 90 percent of the residents served have either severe or profound disabilities, and nearly all have medical and/or behavioral challenges requiring daily intervention. The design of Sycamore incorporates healthcare needs such as wider corridors, specialty bathing facilities, full mobility access, bariatric accommodations and the various background systems to allow for a safe and caring environment such as nurse call, security, fire safety and a storm proof shelter.

Our approach is to integrate the various healthcare and life safety systems into the design so the home can function as background to the daily routine of living. This approach allows the residents and staff to achieve a higher level of fulfillment buy being able to focus on care and the daily routine.

How did aesthetics (such as natural light, natural materials and textures, use of artwork, homelike and intimate scale) come into play when designing this ICF?

EE: Each home site is a rolling one acre tract of land located in the single family neighborhood, Sycamore Run, offering an open setting for each home with wooded privacy in the rear of each property. The homes are designed to blend into the neighborhood.

The floor plan is the essence of the design. Bedrooms are private, yet can be observed from a nurses’ center that functions as a home office. The home entrance area includes a den than can function as a private space for family and friends. The open concept living, dining and kitchen area serves as the heart of the home and will allow for family and group activities.

Perhaps the best way to describe the design would be that if you removed the various healthcare code and regulatory requirements, each home would function as a normal single family residence. That was the goal and is the essence of the project, to allow the residents and their family and friends to live with dignity in a home environment that up until now was not available.

Common Disabilities

Intellectual disability is a below-average cognitive ability with three characteristics:  I.Q. is between 70-75 or below, significant limitations in adaptive behaviors and the onset of the disability occurs before age 18.  Common intellectual disabilities are:

– Autism

– Down syndrome

– Fragile X syndrome

– Fetal Alcohol Spectrum Disorder (FASD)

Developmental disabilities are a group of conditions due to an impairment in physical, learning, language or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.

Most developmental disabilities are thought to be caused by genetics; parental health and behaviors (such as smoking and drinking) during pregnancy; complications during birth; infections the mother might have during pregnancy or the baby might have very early in life; and exposure of the mother or child to high levels of environmental toxins, such as lead.  Common developmental disabilities include:

Autism

– Asperger Syndrome

– ADD/ADHD

– Learning Disability

– Muscular Dystrophies (MD)

– Spina Bifida

Center for Disease Control

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