The Need for High Quality Intermediate Care Facilities for Individuals with Complex Intellectual Disabilities (ICF/ID)

What is an intermediate care facility for individuals with complex intellectual disabilities?

President Richard Nixon signed an amendment to the Social Security Act in 1971, creating the intermediate care facility (ICF) program for people with mental retardation and subjecting the state schools to federal oversight. States that funded their institutions through the ICF program had to maintain adequate staffing ratios, ensure that residents had access to 24-hour nursing care, educational services, and other programming, and comply with all federal care regulations. Most large state institutions closed due to their facilities being stretched beyond capacity, trying to operate on a shoestring budget and high staff to client ratios. (City Journal: "The Last Institutions" by John Hirschauer

Main Content

An ICF/ID is NOT an institution

"It is an optional Medicaid benefit that enables states to provide comprehensive and individual healthcare and rehabilitation to individuals to promote functional status and independence." (medicaid.gov)

The majority of clients who are residents of an ICF/ID require a continuous program of habilitation services. These services include: health and nutrition services, therapies, activities, training and 24 hour supervision. The staff assist the clients with personal care and activities of personal living based on the individual's needs. Prevocational, work and community activities are offered with coordination, supervision and transportation provided by the ICF/ID staff. Families, guardians and staff meet regularly to create, evaluate, and revise each resident's Individual Service Plan (ISP). Moving a loved one to an ICF/ID is a choice made by families/guardians. It is often made after the heartbreaking decision that caring for a loved one at home no is longer safe or appropriate and after researching all options for continuous care. Parents and guardians also have the option of moving their loved ones to another living arrangement if the ICF/ID is no longer an appropriate placement for their loved one.

With the advances in medicine, people with complex intellectual disabilities are living longer but continue to need intensive medical, therapeutic and social interventions to experience productive and comfortable lives. There is a need for ICF/ID's not to close but to expand and continuously improve the services they provide.

My Personal Experience

In 2012 my sister moved to Divine Providence Village (DPV), an intermediate care facility (ICF) for women who are intellectually impaired. My daughter joined her in 2016. Both girls have multiple disabilities as well as a significant intellectual impairment. Our family was familiar with DPV through their respite care program. The girls had spent several weekends there after my father died in 1997 until respite care funding was discontinued in 2012. At that time both girls were living with my husband and me. Trying in-home respite did not fit our family needs. The girls were serviced by two different agencies making the coordination of services very difficult. At times, it seemed like an invasion of our privacy. The girls looked forward to and enjoyed their respite weekends at DPV. Moving them seemed the best option for them and my family.

While my family and close friends supported us, there were others who criticized our decision to move the girls to DPV. Why would we give up the consolidated waiver that would help to provide home care? Why would I choose an exclusive setting when studies have shown that an inclusive home or community setting is best for people with disabilities? My answer to them was, "You don't know my sister, my daughter, their needs and the needs of my family."

Divine Providence Village has not removed my sister and daughter from the community. They are a part of an accessible community with friends and a staff who meet their medical, physical, social and spiritual needs. They attend a day program filled with a variety of activities as well as community outings. Last week, I received an email from the director of the ICF where my sister and daughter reside. A resident in one of the cottages had passed away. It was a beautiful note describing how the medical and care staff provided around-the-clock hospice care while surrounding the resident with the music, the prayers and the people she loved. We need to recognize the ICFs and model after the agencies that provide exceptional care to our ladies and men with complex intellectual disabilities.

Summary

There are many care options today for families who have an adult with intellectual and multiple disabilities. Families need to have the option to choose the level of care that best fits the needs of their family and their loved one. They deserve quality care whether it be in-home care, life sharing, a community home or an ICF.

Author Credentials: Kathleen M. Cleaver holds a Bachelor’s degree in elementary education and the education of children whose primary disability is a visual impairment (TVI). During her thirty-year career as a teacher, Kathleen received the Penn-Del AER Elinor Long Award and the AER Membership Award for her service and contributions to the education of children with visual impairments. She also received the Elizabeth Nolan O’Donnell Achievement Award for years of dedicated service to St. Lucy Day School for Children with Visual Impairments. Explore Kathleen's complete biography for comprehensive insights into her background, expertise, and accomplishments.