Perkins School for the Blind Transition Center

Filling the Gaps in Healthcare: The Vital Role of Information Sharing for Individuals with Autism and Intellectual and Developmental Disabilities

Wading through the complex landscape of healthcare for individuals with autism and intellectual and developmental disabilities (I/DD) and their caregivers can be frustrating, often hindered by a variety of barriers unique to this population. While systematic and overwhelming, these challenges are solvable when we all make a concerted effort to fill in gaps with information sharing.

Animated healthcare setting

By fostering strategic communication between healthcare providers, human service organizations, and families, we can unravel the complexities, fill the information vortex that often exists, and create improved healthcare outcomes and a more inclusive healthcare environment.

For the average person, healthcare includes making an appointment with a doctor, communicating any challenges, and hopefully finding solutions. For individuals with autism and intellectual disabilities, limited understanding and awareness among healthcare providers about their unique needs can result in miscommunication and inadequate care. By creating systems and spaces where families and human service organizations can share information and where doctors are willing to accept and review the information given to them, we can create spaces that include awareness, education, and the implementation of sensory-friendly practices within healthcare settings.

Some barriers faced by those with autism and I/DD include:

Limited Appointment Time – Individuals with autism and intellectual disabilities may require more time during healthcare appointments due to potential communication challenges and sensory sensitivities. In a conventional healthcare setting where appointment times are often limited, this poses a significant barrier to providing effective and personalized care. A shift towards longer appointments fosters a patient-centered approach, acknowledging and accommodating the unique communication needs of individuals with autism and intellectual disabilities.

Sensory Overload in Waiting Areas – Waiting areas in healthcare facilities, designed without consideration for sensory sensitivities, can be overwhelming for individuals with autism and intellectual disabilities. The sensory overload experienced can exacerbate stress and anxiety, potentially leading to negative healthcare experiences and impacting the ability of the individual to effectively communicate concerns. To address this, a proactive approach involves redesigning waiting areas to be sensory-friendly. By creating calming and accommodating environments, healthcare facilities can significantly reduce stress levels and make the overall experience more accessible for individuals with sensory sensitivities.

Communication Challenges – Effective communication is at the heart of successful healthcare interactions. Individuals with autism may have unique communication styles, which can present challenges in traditional healthcare settings. To overcome this barrier, healthcare providers need to be aware of and adapt to these differences in communication styles, and for those with significant disabilities, even offer simultaneous communication with their caregivers. Implementing communication strategies that account for the diverse ways individuals with autism express themselves is crucial. This includes training healthcare providers to understand and adapt to different communication styles, ensuring that information is conveyed accurately, and that patients have time to process the information and feel heard and understood.

It’s Important to Understand the Whole Person

Addressing these barriers to care begins with ensuring everyone is on the same page and that information gaps are filled before medical care is provided. Beyond conventional health information, the importance of understanding the whole person lies in comprehending an individual’s needs, preferences, and unique characteristics. For those with autism and intellectual disabilities, sensory preferences, behavioral styles, communication ability, and other nuanced traits are integral components of their well-being. A holistic approach that considers the whole person enables healthcare providers to tailor their services effectively. And that can only happen when healthcare providers are able and willing to receive all the information about the person they are treating.

The Role of Comprehensive Information Sharing

The biggest barrier – the one that, if removed, would solve the others – is the information gap. Sharing information between healthcare providers, hospitals, human service organizations, and families is not merely about exchanging medical records. It is about creating a comprehensive individual profile that encompasses their medical history, behavioral tendencies, sensory preferences, and any specific challenges they may face and ensuring that this information is shared to the healthcare provider before appointments. This is true for everyone but more so for those with significant and complex disabilities who often have multiple providers.

Through a pilot program between Bancroft and Cooper University Hospital that has shown promising results, we have learned that five key pillars can guide the approach to solving these barriers:

  1. Staff education
  2. Development of a specialized registry to proactively assess the needs of this population
  3. Environmental enhancements such as sensory rooms, mobile carts, and break boxes
  4. Streamlined care coordination
  5. Fostering strong community connections

It’s important to take a proactive approach by reviewing patient charts to identify individuals with autism and I/DD receiving care throughout health systems. Patients meeting the diagnostic criteria should be flagged in the system with a care coordination note for easy identification. Leadership can receive daily email notifications listing patients with disabilities scheduled for appointments within the next week. Then, a navigator can contact the patient’s caregiver, parent, or DCP to confirm passport information, review available sensory support tools, and assess any additional sensory needs for the upcoming visit or hospital stay.

The navigator can also communicate with the office staff to ensure they are prepared for the patient’s visit. Following the appointment, the navigator can seek feedback from the patient’s caregiver, family, or DCP to make necessary adjustments for future visits.

Collaborative efforts and continuously improving care delivery processes with input from families, caregivers, and providers are instrumental in enhancing coordinated care and ultimately improving outcomes. This includes implementing strategies such as reducing sensory stimuli, providing focused and unpressured time during visits, understanding individual patient needs, and utilizing sensory rooms and break boxes to address challenging behaviors.

Rather than expecting patients and families to conform to rigid processes that may not be in their best interest and could potentially hinder outcomes, the focus should be on tailoring care to meet the unique needs of each individual. This patient-centered approach enhances the overall quality of care and ensures that patients receive the support and resources they need to thrive.

As we move forward, fostering a collaborative approach that prioritizes the holistic well-being of these individuals is essential for advancing healthcare inclusively and effectively. The result is more productive appointments, lower healthcare costs, and improved outcomes.

By addressing challenges such as limited appointment times, sensory overload, education, and communication barriers, we pave the way for a more inclusive and patient-centric healthcare experience. It is about creating awareness and establishing systems that enable effective communication, ensuring that the unique needs of each individual are understood and met with empathy and expertise. As we navigate this path towards a healthcare landscape that embraces diversity and inclusivity, the collaborative efforts of healthcare providers like Cooper University Hospital, organizations like Bancroft, and families become the driving force behind positive change. In this paradigm shift, we find the promise of improved healthcare outcomes, reduced barriers to access, and a future where healthcare is truly accessible to all.

Karen Lindgren, PhD, is Chief Clinical Officer at Bancroft. Sally French, MSN, APN, PMHNP-BC, is Lead Psychiatric Nurse Practitioner at Cooper University Hospital.

Have a Comment?