Developmental Disabilities Training, Neurodevelopmental Disabilities

The IntellectAbility Story

Health and wellness thrive in the absence of uncertainty, misinformation, and risk. While this is true for everyone in every stage of life, it is particularly true for those with intellectual and developmental disabilities. Understanding this is vital for those entrusted to support people in living lives they love.

This is what inspired us to create the first and most comprehensive suite of risk resolution and learning tools for professional supporters: tools that empower, educate and inform those responsible for protecting, maintaining and restoring health, wholeness and a good quality of life for people with IDD. Essentially, we support those who support others.

IntellectAbility educates and empowers support teams, administrators and clinicians with necessary and proven tools for early risk detection replacing risk with health and wellness.

This is why IntellectAbility is the most trusted, leading authority and resource in the field. Our mission is more than risk reduction. It’s replacing risk with life.

Karen Green McGowan began her career in nursing in 1963 when she graduated from Methodist Hospital School (now college) of Nursing in Omaha, Nebraska. She joined the United States Air Force and served as a labor and delivery nurse at Malmstrom AFB in Great Falls, Montana.

Her career in the field of intellectual and neurodevelopmental disabilities began at Glenwood State Hospital School, in Glenwood, Iowa, beginning in 1965. In 1972 she transitioned more than 60 children out of Nebraska’s Beatrice State Home into the community over the next several years.

Karen’s specialty has been with persons labeled medically complex, often labeled (without justification) with profound and severe intellectual disability. She has been a clinical nurse consultant since 1977 and provided technical assistance to more than 40 states and 9 Canadian provinces. She has also served as a technical consultant to the Disability Rights International organization and assisted in assessing needs of physically and mentally challenged persons in Romania, Serbia, the Republic of Georgia, Mexico and Ukraine.

Ms. McGowan has served as an Expert Witness in a number of class action and right to treatment court cases, specifically in Louisiana, Alabama, Pennsylvania, Nebraska, North Dakota and New York among others. She has authored a number of developmental disabilities training manuals for clinicians such as nurses, physicians, therapists and direct care professionals, particularly in the area of Physical and Nutritional Management.

In 1992, while working as part of a federal review panel, she became the lead developer of The Health Risk Screening Tool (HRST) (formerly known as the Physical Status Review), which has become an industry leader in identifying and managing health risks in vulnerable populations.

On January 1, 2015 she assumed the presidency of the Developmental Disabilities Nurses Association (national) and has since retired this position.

Identification of Need

Below is a brief summary of information from the “Hodges Report,” published in 1984 by Brehon Institute for Human Services. The Hodges Report helped to identify the need for an instrument like the HRST and provided some of the early groundwork for its development. During the years 1982-1984, a number of people from the Tallahassee and Orlando Sunland facilities were moved into a series of 3-8 bed units, or clusters, which were designed for people defined as “developmental-medical.” These clusters were located at six separate sites around the state of Florida.

In February of 1982, the first death of a person occurred in the Hodges cluster, located in Jacksonville. In the next two months it was followed by three other deaths. By April of 1983, nine people from this facility had died. No other facility experienced such a large number of deaths relative to the number of people it served.

The higher death rate at the Hodges cluster was not explained by greater fragility or medical complexity of those who lived there, but instead by the inadequate care capacity at the cluster that was unable to meet their needs. The Hodges cluster had a smaller, less well trained, more unstable labor force than the other clusters, with a higher staff turnover rate and fewer staff available on any given shift.

As a result of this, several vital steps to the successful oversight and support of people with various types of developmental disabilities were identified:

Always know if a person’s condition is getting better or worse.
Have an early warning system to detect destabilization.
Do not let chronic health issues become routine or invisible.
Records must provide useful data about trends.
Ensure continuity of care across providers.
Monitor residential settings to assure health and safety.

Initial Development

Hissom, a state-run institution built in 1963 for individuals with developmental disabilities in Sand Springs, OK.

The Health Risk Screening Tool (HRST) originated in Oklahoma in the early 90’s as part of a class action court case: Homeward Bound v. Hissom Memorial Center. This case was overseen by a federal judge, James Ellison, in the Northern district of Oklahoma. With nearly 1,100 class members, including a number of children using a range of medical technology, the institution was scheduled to close in 1994. Judge Ellison appointed a nurse to the panel (Karen Green McGowan) to assist him in protecting the health and safety of those class members whose fragile health status was of great concern to him.

The consent decree mandated that no class member could be placed in a residential facility larger than three (3). Further requirements were that the cost of all residential placements could not, on the average, exceed the daily cost at Hissom. A Federal magistrate had been appointed to mediate disagreements between the parties and/or families when there was a dispute as to the type of placement.

Most families, particularly those with young children, were used to 24-hour nursing coverage. There was no objective mechanism to measure the fragility of these people and so the outcome of the disputes most often went to the families. The cost of nursing coverage for 3 person settings was often doubled in order to fulfill this requirement.

Ms. McGowan and the Area II RN, Shirley McKee, brought together a group of nurses along with an out-of-state nurse consultant, to brainstorm for a few days about the requirements for a surveillance process to protect the health and safety of this population.

Since nursing supports were nearly non-existent in the three regional systems, the group decided that the tool would need to be used by someone who knew the people well, but who had relatively little medical background. Hence, the group that the tool was designed for became the case managers. Case Managers were assigned to waiver participants in the community at a ratio of 1:25, and during the first 12 months, 1:10 following transition from Hissom.

Field testing and implementation

The original paper tool was known as the Physical Status Review (PSR). This paper instrument was field tested by the RNs in the Oklahoma DD system on some 6000 people, including those from the other two state facilities. This allowed for the honing of the instrument on a broad range of people with disabilities and resulted in a number of changes to the instrument.

At that time there were also efforts to develop a state-wide health care policy, Health Care Policy for DDSD (Developmental Disabilities Services Division). The Health Care Policy for DDSD specified that health supports were tied to Health Care Levels determined by the Physical Status Review (now called the Health Risk Screening Tool).

Health Care Levels were assigned based on points accumulated on the PSR, with Levels I and II being low risk, Levels III and IV being moderate risk, and Levels V and VI being the highest risk. Those at Level VI were the only people designated as eligible for 24-hour nursing care. This designation of eligibility based on an objective instrument administered by trained and experienced health care personnel now allowed the state to win its arguments with the Federal Magistrate.

This allowed the state to reduce its residential costs to meet the other requirements of the Settlement Agreement. The tool was also used to drive surveillance requirements such as RN review, referral for therapy assessments and medical specialty assessments.

Continued development and expansion of use

The HRST remained paper-based until 1998, when the first attempt at an electronic version was developed in Oklahoma. This was a single-user version that allowed up to 300 people to be entered on a single computer and then to analyze their health care stability over time and in relation to each other.

Starting in the late 90s several state DD Divisions began implementing and mandating use of the Health Risk Screening Tool to monitor health and safety, and to determine the type and extent of professional support and training. States included: Tennessee, Louisiana, New Mexico, Maryland, Illinois and Georgia.

The web-based HRST began development in 2005 and was introduced in Georgia by the Department of Behavioral Health and Developmental Disabilities (DBHDD) in 2007. Previous to this, Georgia DBHDD had some 10,000 people on the paper HRST, but found the utility of the paper tool limited. From 2007-2015 some 15,000 people were entered into HRST Online and are now updated annually, allowing the state the ability to monitor their health status by region, by case manager, by provider or other individual entity.

Currently the HRST is utilized by Intellectual and Developmental Disabilities and Behavioral Health Divisions in nine states and over 2,000 private provider agencies in the United States.

The HRST is now online, allowing information to be shared and accessed securely from any computer

Our Purposes at IntellectAbility:

To broadly provide service and educational intervention to assist in the prevention of preventable morbidity and mortality
To broadly implement a process of surveillance that provides early identification of health destabilization
To identify persons who require professional interventions beyond those required by a community of persons without neurodevelopmental disabilities and differences
To educate families and service providers about the health and behavioral interventions required by vulnerable populations
To provide service administrators the knowledge, tools and systems to monitor the effectiveness of health care services
To assist government agencies and service providers in establishing equitable allocation of resources to those they support
To assist government agencies and service providers to reduce costs related to health care of those under their care
To prevent unnecessary or over use of medications
To free persons from restrictive services, interventions and settings they don’t need or want

Our Mission

We provide tools and training to those who support people with vulnerabilities, helping them replace risk with health and wellness.

Meet Our Executive Team

Dr. Craig Escudé, MD is a Board certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine. He is the author of “Clinical Pearls in IDD Healthcare” and “The Curriculum in IDD Healthcare”. Dr. Escude assumed the role as President of IntellectAbility in 2018.

Craig Escudé, MD, FAAFP, FAADM

President

Johnathon has nearly 20 years working in the field of Intellectual and Developmental Disabilities. For many years he was the Vice President of Operations for a large Support Coordination agency in Georgia. Concurrently he worked as a Supports Intensity Scale (SIS) senior trainer with AAIDD, working in both the US and Canada. He is a certified Person-Centered Thinking Trainer by The Learning Community for Person-Centered Practices. He has been with IntellectAbility since 2013 and is currently its Chief Operations Officer.

Johnathon Crumley

Chief Operations Officer

Lorene Reagan is a registered nurse with more than 35 years of experience providing supports for people with IDD. Prior to joining IntellectAbility in 2022 as Director of Public Relations, Lorene served as a state Bureau Chief for IDD services and as a Senior Medicaid Policy Administrator. She was Manager of Care Management for a Medicaid managed care organization and, most recently, a Principal at Mercer Government Human Services Consulting, providing consultation to Medicaid programs across the nation.

Lorene Reagan, RN, MS

Director of Public Relations

Rob Refo has been with IntellectAbility since 2010. Rob’s background includes 20 years of training and management consulting of private-practice healthcare professionals. Prior to working with IntellectAbility he was the Senior Director of Operations for one of the fastest growing consulting companies in the United States.

Rob Refo

Chief Sales Officer

Brandon Lancaster joined IntellectAbility in 2019 as our Director of Information Technology. Throughout his career he has amassed experience across the field of IT, including Information Security and Platform Development. His primary responsibility here at IntellectAbility is to oversee the continued development, implementation, and support of our tools, such as the HRST.

Brandon Lancaster

Chief Technology Officer

Ryan Lutz joined IntellectAbility in 2021 as our IT Project Manager. Ryan is a seasoned Information Technology professional with years of experience in the healthcare industry. Skilled in Technical Project Management, Account Management, Customer Service, and Support, he oversees and helps facilitate the successful adoption and implementation of our products, including the HRST, eLearning, and Custom Development.

Ryan Lutz

Director of IT

Gina Kugler has been with IntellectAbility, since 2014 as the Senior Director of Administration. Prior to joining IntellectAbility she was the VP Finance for a multimillion dollar video distribution company and held that position for 14 years.

Gina Kugler

Chief Administrative Officer

Dina has been in the medical field since 1995. Most of her career has been spent working with individuals with Mental Health needs for a local government in Virginia. She successfully managed four ICF's, five Group Homes and the medical component of the Day Program. Dina joined IntellectAbility in January 2019 as Director of Client Services.

Dina Pizzurro-Smith BSN, RN, CDDN

Director of Client Services

Saskia Troio comes from an extensive background in team establishment & management. Throughout her long career as a vice president in a nationwide marketing firm, she has gained experience in marketing, sales, project management, and establishment. Saskia has a passion for our industry. Helping those who support people with IDD is near and dear to her heart. Her primary responsibility as our Director of Establishment is to oversee the hiring and training of staff and to keep a positive and diverse company culture alive in all aspects of our business.

Saskia Troio

Director of Establishment

An Introduction to The
HealthRisk Screening Tool

See how the HRST helps states and agencies to better care for people with IDD.

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