BY NICOLE BERMAN, RN, MSN, CCM, WITH MARY MCLAUGHLIN DAVIS, DNP, ACNS-BC, NEA-BC, CCM
Intellectual disability (ID) is the most common developmental disability, diagnosed when a person has particular limitations in cognitive functioning and skills, including communication, social and self-care skills. These cause a child to develop and learn more slowly or differently than another child in the same age range. According to the American Association of Intellectual and Developmental Disabilities, an individual has intellectual disability if: IQ is below 70-75, there are significant limitations in two or more adaptive areas and the condition manifests before the age of 18. The most common causes of intellectual disability are: genetic conditions, complications during pregnancy, problems during birth, and diseases or toxic exposure. Approximately 6.5 million people in the United States have an intellectual disability (Special Olympics, 2022).
Autism or autism spectrum disorder (ASD), a type of (ID), is a complex neurological and developmental condition that affects how a person learns, communicates and interacts. Approximately 1 in 44 children in the U.S. have ASD (CDC Autism Spectrum Disorder, 2022).
Individuals with developmental delays and disabilities (IDD) are a special population, multifaceted in their origins, diagnoses and treatment. However, they have commonalities that allow for a special case management focus. Patients may have cognitive impairments, physical impairments or both. These challenges can create behavioral issues that impede the opportunity to receive the correct medical and psychiatric treatment they need. Limitations in intellectual functioning known as mental capacity and adaptive behaviors define IDD (American Association on Intellectual and Developmental Disabilities AAIDD, 2022). Adaptive behaviors encompass conceptual, social and practical skills learned as one develops from infancy through adolescence. Standardized tests confirm the disability by the age of 19 years (AAIDD, 2022). Patients with IDD experience disparities in healthcare exacerbated by other disparities they may experience such as housing and reading, numeracy and health literacy (Sullivan, Berg, Bradley, 2011).
Patients with IDD benefit from management by an interdisciplinary team: a medical practitioner, nursing, therapies and a case manager.
Health complexity can include chronic disease, social concerns and inadequate access to care, programs and services. The term includes impairments, disabilities and financial challenges.
Case managers navigate health complexity with their patients, while teaching them to navigate independently as much as possible. The case manager views the patients from the perspective of their past medical history, their current social circumstances and predicts what damage would occur if the patients did not receive the assistance they needed (Fraser, Perez, Latour, p. 22, 2018).
Navigating the healthcare system can be overwhelming for case managers, let alone for lay people. That familiar saying, ”It takes a village,” is truer today than ever before. Moreover, for parents of children with developmental delays and disabilities, that village needs to be a city! The issue for parents is that there is no map for them to follow. They rely on case managers and social workers to act as tour guides to that “city” of resources that are needed for pediatric patients and their families.
I did not know I wanted to become a case manager when I graduated from high school. I also did not know I wanted to become a nurse. I took the normal path into adulthood: college, job, marriage, home and children. It was perfect; it was easy.
Our firstborn son, Larry, presented with pervasive developmental delays not otherwise specified (PDD-NOS), and just like that — my path was no longer clear or easy. Even the name was confusing: PDD-NOS? What did that even mean? Suddenly, there were therapist and physician appointments, and our county board of developmental disabilities (DD) assessed Larry, recommending enrollment in early childhood intervention programs. The terms autism, autistic spectrum and developmental disabilities used interchangeably became our jargon. Amid the chaos, we could not even tell if we were in denial, or in agreement or even in any frame of mind to be making these decisions for our son. We did not have time to think, and time became an enemy we could not overcome. We learned brain elasticity and the ability to develop speech required immediate intervention before the brain lost the ability to form new neural pathways with age.
Although it seems inconceivable to anyone reading this now, not all insurance companies provided coverage for autism treatments. Those health insurances that did offer coverage lumped autistic spectrum disorders into the mental health category, with 12 to 20 visits per year for therapy — far less than the 2 to 3 times a week recommended to make any difference for our son. Mental health coverage did not apply to approved behavioral analysis (ABA). There were no specialized autism spectrum schools to teach children, so we had to apply for loans and re-mortgage the house to obtain the necessary funds to pay for the therapy Larry needed so desperately.
I learned to plan for multiple eventualities, often finding out-of-the-box solutions to provide Larry with the hours of individual therapy he needed every day. Without a payer source, I reached out to local colleges with speech therapy programs and special education programs. I hired students who could use the hours spent with Larry to satisfy their practicum hours. I applied for programs that would help to provide wages for caregivers to be with Larry to provide some on-site respite. We provided them with training on how to play with him and how to communicate with him.
We were fortunate that our county board of DD supported early intervention screenings. We enrolled Larry into early intervention at 20 months of age. His early intervention specialist was patient, kind and optimistic. We began a daily routine of at-home training, followed by reading books on autism interventions during the time that Larry slept.
We drove to Boston to have Larry evaluated using the Miller method. It was a turning point for us, as Larry could not speak and had difficulty using picture symbols to communicate. In two days, he learned sign language for so many words: Open, close, jump, more, stop, run — for us, it was a miracle! We continued to work with our school system and therapy, and Larry continued to improve in his ability to communicate. Larry’s world opened, and words cannot express the joy on his face when he realized that he had language at his command, crude though it was!
I formed friendships with parents going through the same situation. I worked within the county DD system to identify unorthodox solutions that would provide the needed supports for my son. I collaborated with our local school district to develop plans to help Larry be successful at school. I became a parent who was willing to share the knowledge that I had gained with other parents struggling to navigate the system while still in shock from learning of their own child’s new diagnosis.
The years took on a cadence as I accepted Larry’s diagnosis. I took this time to return to college and study nursing, as I found I had a passion for working with other individuals in need. I began to be grateful for the blessings of raising a child with special needs. I learned to celebrate the smallest of gains and not become discouraged with each small setback in progress. Most importantly, I continued to love the person Larry was, meeting him in that space he was at in that moment.
With the arrival of puberty, our lives took an unforeseen turn. There is little research on the development of autistic children into teens and adulthood, including those who become aggressive or develop violent behaviors in puberty. We developed first-hand experience.
Larry began to experience outbursts of emotion, reaching out to push or hit without reason. My husband and I searched for triggers. We searched for patterns. What could we change in the environment that would de-escalate the aggression? We failed! As the episodes of aggression became more frequent and more violent, our arms, face and neck were often covered in bruises, scratches and bites that broke the skin. I realized we were a family in crisis when a stranger at the gas station stopped me to offer me help, thinking I was a victim of spousal abuse!
That day was a wake-up call. We were at the point that we had been calling family members, or 911, to come help us because we could no longer restrain our son to keep him from hurting us and we were afraid to hurt him as we restrained him! We were in a situation that was rapidly spiraling out of control. I knew it could not continue and we reached out to our board of DD contact for help. Our family spent hours calling the numbers on our insurance card, trying to determine what services we could access. Inpatient behavioral health was the best option and least palatable. We did not want to have a mental illness stigma attached to our son.
Inevitably, there was the one episode that proved we no longer had a choice. Larry attempted to push his younger sister down a flight of stairs, forcing us to take immediate action and place him in a psychiatric hospital. The psychiatric team stabilized Larry on medications and we moved him to a group home that met his needs. Larry lived six hours from his home, and this required faith and perseverance for our family. Three years later, we moved Larry close to home while working with county and state DD departments.
Larry now lives in a home with full-time caregivers provided by DDI. We still have difficulties and outbursts, but years of experience and reading have taught us our “best practice,” which we feel fortunate to share with other parents, patients and case managers.
The need for case managers who understand this complex patient population is great, and the purpose of this article is to create an awareness of the problem with the hope that case managers will embrace the holistic case management of children and young adults with DDI.
As case managers, we are constantly looking for the cause of disruption in a patient’s life and how we can intervene with a plan to get that patient back on the track to optimal health. I began to use what I had learned from Larry, applying that questioning mindset to all patients and families.
There normally seemed to be two areas that inevitably needed support for pediatric patients and their families: Family processes and family coping. Case managers must assess the patient and the family to determine the level of family disorganization, the exhaustion of the caregivers, the caregiver’s capacity to understand the information coming at them, their knowledge of what to do with that information and the caregiver’s capacity to connect with community resources (Phelps, 2019, p. 143-147). Case managers need to help parents identify and apply for community resources as the systems involved are difficult to navigate: federal, state, county and school district programs do not communicate well with each other and often do not know of other resources available. Parents need assistance to help the siblings of the affected child cope with the disruption in the family.
Using motivational interviewing and teach-back will help to gauge the family’s current ability to navigate the healthcare system and manage their situation.
The case manager should document the plan, intervention and response to the intervention in detail. This will help decrease any gaps in transitions of care from one setting to the next for patients with developmental disabilities (Phelps, 2019, p. 216-218).
Social work intervention may be necessary for many families. Be prepared to dig beneath the surface with families of DD children when performing assessments!
With the ever-increasing number of children diagnosed with developmental delays and disabilities, most case managers will encounter a special needs patient.
These are statistics regarding the prevalence of autism alone from the Centers for Disease Control and Prevention (CDC):
- One in 44 children are autistic. Since 2000, the autism prevalence rate has been consistently increasing from 1 in 150 to now 1 in 44.
- Over 7 million individuals in the United States are on the autism spectrum; autism is the fastest-growing developmental disability in the U.S.
- The diagnosis rate for autism is rising by 10-17% each year.
- Autism affects all ethnic and socioeconomic groups.
- Autism in boys is 4 times more likely than in girls.
- Children who receive an autism diagnosis by age 4 are 50 times more likely to receive services.
With prevalence rates like these, finding available services is as challenging as it is frustrating for parents. I did not realize how much of what I was attempting as a parent was the actual role of a case manager. Looking back, it is not surprising that I ended up in this specialty, and it brings me a bit of humor to say that part of my case management training came from the “School of Hard Knocks.”
I hope to share some information that will help families understand a bit more about the current healthcare landscape — with (hopefully) fewer hard knocks along the way:
- Medicaid is state-run, whereas the federal government runs Medicare. Help families find and connect to available Medicaid waiver programs and Supplemental Social Security Income programs.
- Find local support groups. I cannot stress enough how important this is — especially for siblings to have relationships with other siblings going through similar life situations. Two national support groups with goals to further the understanding of autistic spectrum disorders are the American Society for Autism (they can direct you to the individual state autism societies) and Autism Speaks.
- Connect with your state and county boards of developmental disabilities. They may have a slightly different name. Talk to your pediatrician to find out what is available at the county level, and ask if they have a case manager or social worker in their office that can help parents navigate the services, DME, developmental toys, software, transportation adaptation devices, etc.
- Connect with your state and county health departments. Do not assume that they are aware of all the programs offered by school systems or boards of developmental disabilities or vice versa. Many government agencies still work in silos with poor dissemination of information outside of that specific agency.
- Connect to your state, county and local school boards/districts of your residence. Your school district may be able to provide many educational supports for school-aged children.
- Find your state and county department of job and family services; the names vary, but they will have them. This is a crucial step for parents, as these agencies administer and monitor many Medicaid waiver programs. There are waiting lists of more than 10-15 years for many waivers. So, apply early!
- Find a local pediatrician who works with other children with disabilities. They will often know more about resources such as therapy, psychiatry, pediatric dentists and other specialists who have done well with their patients in the past.
- For care managers, reach out to your local CMSA or NASW chapters for resources, and reach out to National Chapters through the CMSA National Blog as well. Some areas of the country have high prevalence rates, and there are likely many suggestions and ideas that may not be as well known to local chapters that do not have as high a population of individuals with autism.
- Determine which home healthcare agencies can accommodate pediatric patients with special needs. It is best to be prepared; it will likely be an emergent situation when home care will be needed, and that is not the time to find out there are no agencies that can accept children with autism.
- Connect with the child’s insurance case manager (or request that service, if able) to determine what supports insurance can provide for the patient and the family.
Parents of children with special needs will not “age out” of the need for help in navigating the system. Larry is now 27, and my husband and I find ourselves back at step one with learning about the supports that are available for a young adult with autism. In many states, the school system does an incredible job at providing supports to children with autism. This is a blessing. The downside to this is that when the child ages out of primary education, it is like stepping off a cliff edge. There are few available supports for autistic adults. The stress can again feel insurmountable at times! Perhaps the best intervention we have is to listen and ask questions, often and without judgement.
Last, but not least: Thank you! I would not be where I am at today without the guidance and grace provided to our family by social workers and nurse case managers along the way. You may never know how your kindness and perseverance brought a family through the crisis, but I am here to say that it has. I will never forget the people who were there for Larry and our family; although for them, it was just their job and another family in crisis for them to help. It brought us through the storm and allowed us to remain a cohesive family, which was miraculous!
American Association on Intellectual and Developmental Disabilities. https://www.aaidd.org/
Autism speaks. https://www.autismspeaks.org/autism-statistics-asd)
CDC Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/addm.html
Fraser, K., Rebecca Perez, B. S. N., & Latour, C. (2018). CMSA’s integrated case management: A manual for case managers by case managers. Springer Publishing Company.
Phelps, L. (2019). Sparks & Taylor’s Nursing Diagnosis Reference Manual. Lippincott Williams & Wilkins.
Sullivan, W. F., Berg, J. M., Bradley, E., Cheetham, T., Denton, R., Heng, J., … & McMillan, S. (2011).
Primary care of adults with developmental disabilities: Canadian consensus guidelines. Canadian Family Physician, 57(5), 541-553.
Special Olympics, https://www.specialolympics.org/about/intellectual-disabilities/what-is-intellectual-disability?locale=en
Nicole Berman, RN, MSN, CCM, is senior director case management at Cleveland Clinic, Avon, Fairview, Lutheran and Medina Hospitals.
Mary McLaughlin Davis, DNP, ACNS-BC, NEA-BC, CCM, is senior director case management at Cleveland Clinic Main Campus, Akron General Hospitals.