How Electronic Health Records Aid People with Developmental Disabilities

Your sister. Your uncle. Your friend’s brother. Your son’s classmate. For most people, fewer than six degrees separate them from someone with developmental disabilities (DD). According to the Center for Disease Control and Prevention, it is estimated that developmental disabilities occur in about 17 percent of U.S. children under age 18, which emphasizes the need for more effective health care for this particular segment of the population.

One way to foster better care and treatment for people with DD is adoption of electronic health record (EHR) technology. Agencies that provide service to these clients deal with a wide range of issues and regulations, calling for a comprehensive solution that collects every piece of data in an organization’s workflow. Additionally, having all of a person’s information in one place will guarantee that those seeking treatment will receive the best care possible and eliminate errors caused by antiquated paper processes.

DD and MR: A Unique Subsection

In behavioral health, organizations that provide service to people with developmental disabilities have a lot to think about when searching for the right electronic health record system. EHR vendors vary significantly from one to the other – just like the people receiving the service themselves. Developmental disabilities can take shape in a number of forms, including: 

• Autism
• Down Syndrome
• Asperger’s Syndrome
• Seizure Disorders
• Fetal Alcohol Syndrome
• Cerebral Palsy

Closely related to developmental disabilities is mental retardation (MR), and clients with DD or MR require vastly different treatment from others within behavioral health field, such as those seeking help for substance abuse. Individuals with DD/MR cannot go to a clinic and leave nine months later recovered – or on the road to recovery – from their condition. They require a lifetime of services and treatment. What’s more, as they age, health issues often become more complicated, thus demonstrating the need for a comprehensive medical record that cannot be lost or mismanaged.

In addition, one facility can offer multiple programs that can range from employment services to family support services and much more. This makes it necessary for systems to have both breadth and depth, and executives must look for vendors that truly pay attention to the complexity of their organization’s processes.

The Growing Need for EHRs

When there are staff members to pay, programs to launch, and expenses to cover, many will look at EHR software as an unnecessary, financially burdensome investment. Certainly organizations have gotten by just fine up until now without EHRs, but this technology has the potential to transform the way agencies do business and provide care. It remains to be seen just how effective EHRs will be, but most expect a large return on investment – and we’re not just talking financially .   

For organizations that service individuals with DD/MR, one factor to consider is the aging of their clients. In the 1930s, the mean age at death for persons with DD/MR was 19, and by 1993, this number had increased to 66. Clearly, advances in technology and treatment have led to better quality of life and lifespan for this vulnerable population. With the Baby Boomers moving into their twilight years, the nation as a whole will see a shift in demographics, including the number of aging individuals with DD/MR.

A 2009 report by APS Healthcare points out that people with DD will achieve the same benefits as other people in terms of improved information technology. These include:

• Ability of service teams to access a single source of information about the person
• Transparency of information across stakeholders
• Access to information difficult to obtain by consumers

It is true that EHRs allow these benefits to be realized for the entire population, but the value of automated systems is even greater for those with DD/MR. Aside from reducing costs and increasing quality patient care, EHRs have an important implication for DD/MR patients living in group homes or other such communities. Moving from place to place makes it difficult to keep track of every service provided, medicine prescribed, and clinician seen. However, with web-based EHR technology, when an individual moves from one place to the other, this health data can be pulled up with the click of a button.

Lessons from the Troops

Although they may seem a far cry from people with developmental disabilities, veterans from the wars in Iraq and Afghanistan may help illustrate more clearly the importance of electronic health records. As these wars continue overseas, the number of traumatic head injuries is rising, leaving some soldiers returning home much different than the way they left. Many of these injuries, like developmental disabilities, will last forever.

In the last few years, the Department of Veterans’ Affairs health care system has been inundated with disability claims, which can take up to six months to fully process. Add to this the rise in traumatic head injuries and the United States has a real problem on its hands. In response to this, the U.S. Army released Mobile Care (mCare), a telehealth pilot program that enables veterans with traumatic brain injuries or other serious injuries to be medically monitored by using their cell phones, according to Government Technology.

This mobile technology, coupled with a reaffirmed national commitment to improving health care, will undoubtedly lead to better health outcomes. It helps that President Obama has made public declarations about computerized medical records for veterans, but this same spirit and dedication to improve health IT can be carried into other populations, such as the mentally retarded and developmentally disabled.

For organizations dealing with DD/MR patients, it is important to recognize the need for this technology as well as to understand specific functionalities required by each agency. When searching for an EHR vendor, the executive team must look for a system robust enough to support all of these requirements in addition to clinical and administrative requirements. The system should also address reporting, contracts, costs and revenue.

Expanded information technology offers organizations a way to better manage the health care of their clients. EHRs can send alerts to providers, which act as reminders for appointments, check-ups, and documentation requirements. Plus, organizations can utilize digital systems to cut down on administrative costs and become more transparent in their reporting.

Stimulus funds and proposed bills are changing the face of health care altogether, but health IT in particular has the power to affect the lives of countless individuals. Hospitals and physicians’ offices make the headlines every day as they make the switch to an EHR system, but it is equally important for organizations providing DD/MR services to grab a piece of the technology pie. After all, people with developmental disabilities deserve the same caliber of treatment as others, and an electronic health record system is one way to ensure this equality.