This brief report summarizes a contractual public-private partnership between the state of Maryland and a nonprofit organization, and describes the important role that a team of professional psychologists play in this partnership. The partners include the Maryland Department of Health’s Developmental Disabilities Administration (DDA), a state agency that provides services and supports in people’s homes and in the community for individuals with intellectual and developmental disabilities and the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute, which is Maryland’s designated University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD). To implement this public-private partnership, the MCDD recruited us – a workgroup comprised of an attorney specializing in disability rights who is also the director of MCDD as well as expert psychologists (the majority of whom obtained their board certification in Clinical Neuropsychology through the American Board of Professional Psychology) employed at Kennedy Krieger Institute, a hospital serving children, adolescents, and young adults with neurological, rehabilitative, or developmental needs. The goals of this public-private partnership are to provide training, consultation, technical assistance, and eligibility recommendation for the DDA applications from individuals with complex diagnostic histories and clinical presentations, which can prove challenging in the DDA eligibility process. As far as we know, this partnership is the first and only one of its kind. When the partnership was created in 2019, our goal was to be a model for other states to replicate this work. Furthermore, when the DDA contracted with us instead of another organization outside of Maryland, it was able to keep funds within the state.
As professional psychologists, we believe that because of our board certification we are recognized as experts in our field by state agencies and that this has increased our credibility when we provide trainings to the DDA staff. We are recognized as specialists who can shoulder the responsibility of seeing a mutually beneficial partnership become successful. The additional competencies and clinical privileges that we have earned because of board certification have been the foundation for “thinking outside of the box” in creating and sustaining this successful partnership and rendering impressions regarding disability status, even though this partnership is not in the context of a clinical setting. To better understand our role in providing recommendations to the DDA regarding an applicant’s eligibility for services, we describe the process below.
Process for Individuals Applying for Disability Benefits
While pursuing disability-related benefits:
- Applicants or their representative complete an application and submit available medical and educational records showing the applicant’s intellectual or developmental disability.
- Once the DDA receives an application, the applicant is contacted by personnel from a Coordinator of Community Services (CCS) agency who meet with the applicant for an interview. The interview, also referred to as a Comprehensive Assessment, involves obtaining information regarding the applicant’s relevant history as well as current adaptive functioning.
- A report of the Comprehensive Assessment is provided to the DDA, which considers all the available information and decides whether the applicant is eligible for services based upon the Code of Maryland Regulations (COMAR) and uses five criteria that focus on whether the applicant’s severe chronic disability is “attributable to a physical or mental impairment, other than the sole diagnosis of mental illness,” manifested before the age of 22 years, is likely to continue indefinitely, result in an inability to live independently, and reflects the need for services that are individually planned and coordinated for the individual.
Eligibility Recommendations and Professional Development
Although the DDA regional coordinators can make eligibility determinations for most applications they receive, some applications pose challenges for the reviewers due to a variety of reasons (e.g., lack of familiarity with the condition, presence of complicating factors, such as co-occurring mental health diagnoses, limited experience with interpreting test scores). We provide eligibility recommendation with the following specific goals:
- Improve the timeliness and quality of the recommendation.
- Increase competency of DDA staff through additional training.
- Keep the work and funding in Maryland so that reviewers know the jurisdictions where the applicants reside.
- Increase the knowledge and expertise of psychologists serving potential applicants seeking support from the Maryland DDA.
Our team is asked to provide recommendations regarding eligibility based upon our breadth and depth of knowledge related to brain-behavior relationships, psychopathology, neurodevelopmental disabilities and comorbidities, and manifestation of developmental disabilities across the lifespan. As noted above, our team includes an attorney, a clinical psychologist, and four board-certified clinical neuropsychologists. One of the neuropsychologists co-leads the team along with the attorney. Once an application is received from the DDA regional coordinator, it is assigned to one of the psychologists to review. The application is discussed during a bi-weekly meeting where all team members share their insights. The psychologist assigned the application review completes a report with an eligibility recommendation forwarded to the DDA within 30 days of receipt of the application.
For the written report, we use a template created with input from the attorneys representing the DDA. It includes demographic information of the applicant, sources of information reviewed, applicant’s background information (i.e., summaries of developmental, psychiatric, educational, occupational, and treatment history, as well as previous psychological, neuropsychological, educational, or psychiatric evaluations, and adaptive functioning), legal and clinical standards, review and opinions (i.e., opinion as to whether the applicant meets each of the five criteria) and a brief narrative summary of impressions and conclusions.
During the review process, we apply our expertise and knowledge of various neurological and psychiatric conditions that impact cognitive and adaptive skills to determine whether the applicant’s functioning is similar to that of an individual with an intellectual development disorder. An example is described below:
An individual who underwent high dose photon radiation treatment in toddlerhood for an aggressive central nervous system tumor applied for disability benefits in the state of Maryland. The applicant’s caregivers were noticing increasing functional limitations and had submitted a DDA application when the individual was in their late twenties. While the DDA acknowledged that this individual demonstrated substantial functional limitations, the applicant was found ineligible as their challenges in intellectual and adaptive functioning were thought to be unrelated to a developmental etiology. Our team provided insights on the severe negative impact of high-dose radiation during early childhood on intellectual and adaptive functioning. We explained how this exposure significantly impacted the applicant’s brain development, leading to impairments like those in intellectual disabilities and recommended that this individual be considered eligible for services. Fortunately, DDA accepted our recommendation. The caregivers reached out to us and stated that they were trying to access resources for their daughter since 2017 but were repeatedly unsuccessful. They were highly appreciative of our work and included the following in their email, “IMHO, it is your exhaustive assessment that convinced DDA that XX is indeed “Eligible for Full DDA Services.” I cannot thank you enough for your expertise and in-depth evaluation.”
To enhance professional development, team members and other Kennedy Krieger Institute staff offer training to DDA on a variety of topics relevant to developmental disabilities. Some of the presentation topics have included autism spectrum disorder (ASD), fetal alcohol spectrum disorders (FASD), Fragile X syndrome, co-occurrence of psychiatric and developmental conditions, psychometrics, and pediatric epilepsy syndromes. In addition, psychologists from our team periodically attend DDA eligibility coordinator team staff meetings to provide in vivo case consultation. Lastly, the team provides a short-term training opportunity for postdoctoral fellows. The partnership is mutually beneficial as the work has influenced clinical practice at Kennedy Krieger Institute as well as the surrounding community in meaningful ways.
Impact on Clinical Practice
All of us involved in this partnership have gained invaluable insights regarding the process that is utilized by a state agency to provide services to individuals with a disability. Specifically, this experience has improved our clinical practice throughout the evaluation process from assessment to report writing. We now truly understand the importance of not relying only on caregiver rating scales to document the individual’s level of support needs in all domains that are considered by the DDA in determining eligibility (i.e., self-care, understanding and use of language, learning, mobility, self-direction, and capacity for independent living).
To better understand our patients’ current adaptive skills, we have developed a rating scale focusing on evaluating independent functioning in adults. The ratings are completed by us based on the patient’s input and clinical observations during our evaluations and allow us to thoroughly evaluate and document level of independence in a more concrete way than relying solely on other available standardized rating scales. For example, our assessment system includes unique items that ask about important daily living skills such as whether the individual can typically eat a balanced meal, uses or arranges for transportation, can safely use a microwave, and maintains adequate sleep habits.
In addition, our partnership with the DDA has influenced our report-writing style for our patients who would potentially be eligible for DDA services. For these patients, the evaluation reports might focus primarily on documenting and highlighting the patient’s current level of independence and needs for support in detail instead of a more strength-based evaluation report.
Conclusions
This partnership has greatly benefited all parties involved. Not only has it enhanced our understanding of the disability eligibility process, but it has also improved our clinical assessment and documentation. This collaboration has increased our capacity as psychologists to advocate effectively for our patients and may serve as a model for future partnerships. By providing training and sharing the most up-to-date information with the DDA staff, we have expanded their knowledge of complex diagnostic presentations and long-term impacts of developmental differences, creating a potentially significant impact for advocacy. The broader psychology community has also benefited from these trainings by learning new approaches for assessing adaptive functioning and improving documentation. Ultimately, the goal of this partnership is to improve access to services for individuals with intellectual and developmental disabilities, and we continue to make progress in our efforts at the state level.
Shruti P. Rane, PhD, ABPP
Board Certified in Clinical Neuropsychology
Correspondence: rane@kennedykrieger.org
Elgiz Bal Sener, PhD, ABPP
Board Certified in Clinical Neuropsychology
Maureen van Stone, Esq, MS
T. Andrew Zabe, PhD, ABPP
Board Certified in Clinical Neuropsychology
Rachel K. Peterson, PhD, ABPP
Board Certified in Clinical Neuropsychology
Shalena Heard, PhD
Meg DePasquale, LCSW-C
Lisa S. Hovermale, MD