Mental Health Care for Individuals with Intellectual or Developmental Disability (I/DD) During the Time of COVID-19

While data on the pandemic’s effect on individuals with I/DD is lacking, we can see that the mental health impact in the general population is immense. Rates of anxiety, depression and overall stress have increased,1 and is greater among caregivers2. In my practice, and anecdotally among colleagues, we observe a familiar pattern: a slow and steady increase in difficulties brewing since March of 2020. While there is light at the end of the tunnel as the Pfizer and Moderna vaccines are ramping up production, there still is a long road ahead until life resembles pre-pandemic freedom.

BY Benjamin A. Margolis, M.D. | January 2021 | Category: EP Guide

Mental Health Care for Individuals with Intellectual or Developmental Disability (I/DD) During the Time of COVID-19

Initially in March 2020, with shutdowns implemented, the novelty and immediacy of the changes helped many with coping. Through the Summer in many areas, like in New York where I practice, restrictions were able to ease while case numbers were decreasing and regular programming was able to resume to some extent. As the cold has returned and with it required restrictions on activity, for many individuals, coping skills are strained.

In the mental healthcare field, we have been ramping up to meet the needs of communities and have innovated to be able to deploy care remotely. We have been able to use existing technologies to provide support via telephone and video in ways never before permitted, in spite of many years of technical feasibility. While the needs for mental healthcare among the I/DD community has never been greater, telemedicine has expanded access to help meet that need.

If an individual has never before received mental health supports, there can be some trepidation with regards to making the decision to seek mental healthcare. Fortunately, while psychiatric care may need in-person visits, depending on the circumstances, many problems can be addressed without an individual having to take the risk of presenting to an office in-person. In the setting of psychotherapy and nonpharmacologic behavioral healthcare, telemedicine can be preferable as both the care provider and the individual can see each other unmasked, improving communication.

In spite of expanded availability due to telehealth, it can still be daunting for a parent or caregiver to find care that is sensitive to people with developmental disabilities.

WHERE CAN I GO FOR HELP?

Finding care in the area, especially in rural communities, has historically been a significant challenge. Individuals now may be able to be seen at their residence, and in some circumstances may be able to be treated by a specialty care center in other states. Thanks to regulatory changes in response to COVID-19, geographic barriers to care have in some circumstances been eliminated.

When local care Is best, that geographic challenge remains. Finding a local mental health provider has historically been a significant challenge for many families. As many people who have tried to find mental healthcare may have already deduced, specialty training in I/DD is not currently a required part of psychiatric residencies, and many mental health providers have not had experience working with the I/DD community. While difficult, it may not be impossible to find a provider in your area.

The community may have a hidden gem in a therapist or psychiatrist that works privately, and word-of-mouth networks can be a valuable means of finding mental health resources in your area. The range of resources is diverse, depending on your insurance, your location and your community. The power of Google can’t be underestimated, with searches such as “specialty mental health care for intellectual disability near me,” and related terms, which can link you to community organizations and clinics nearby with resources. There is no magic or hidden resource, it sometimes simply takes the virtual equivalent of elbow grease and patience to find a provider.

In times of crisis, the need may be quite significant and the barriers can seem overwhelming. Depending on the severity of the needs, the delay to an appointment can be an issue. While 911 and emergency services are available if safety is ever a concern, depending on where you live, you may be able to access crisis management services for individuals with I/DD. The START program, which stands for “Systemic, Therapeutic, Assessment, Resource and Treatment” is a national initiative providing comprehensive crisis management tools for behavioral needs among individuals with I/DD. There are with START programs or program partners currently in 14 states, including New York, Texas and California. The START program can be linked to through www.centerforstartservices.org/locations . 

For outpatient psychotherapy and psychiatric care, The National ARC website links to individual ARC chapters, many of which provide listings and links to local providers and specialty care centers. It can take a few clicks, but starting at https://thearc.org/find-a-chapter is an excellent launch point. If there are no links directly from your local ARC, a call instead to the local chapter can help connect you.

The National Association for the Dually Diagnosed is an organization based in Kingston, NY dedicated to improving mental healthcare for individuals with I/DD. A list of their certified mental health providers is available at http://thenadd.org/certified-clinicians , and if there is no listing for your state or community, the NADD can be reached via email or phone and may be able to provide resources closer to home.

For the most comprehensive list of available mental health resources nationally, SAMSHA, the Substance Abuse and Mental Health Services Health Administration website, has a care locator that can quickly provide a large number of resources by zip code, at https://findtreatment.samhsa.gov . This is a list of both I/DD and non-I/DD resources. It is a good idea to ask about the provider’s comfort and experience with working with I/DD and accommodations with telemedicine or in the waiting areas if going from the SAMSHA database.

Local community mental health centers, often state-funded or local nonprofit-run, have also become a de-facto hub for care of people with developmental disabilities nationally, and many have providers who are experienced with and passionate about caring for individuals with I/DD. In areas where specialty care centers dedicated to the care of I/DD are not available, many community mental health centers have therapists and psychiatrists familiar with the needs of the I/DD community and waiting rooms which can accommodate vulnerable individuals and their staff. A call to the front desk staff may not provide an adequate answer to this question, but a conversation with an intake coordinator or manager may provide a name and an appointment with an experienced and ready provider. Better still, many of these centers are now providing telehealth services preventing the challenge of waiting room tolerance and COVID-19 risk. 

Once you have your appointment

Once an appointment is made, the work can begin. It may take some time for a mental health specialist to understand a problem. Having as much information available at the ready will make sure they can begin to help. Recognizing and accurately diagnosing psychiatric disorders in I/DD requires more information than making the same diagnoses in the general population. If you can be ready to help provide information and observations, you can make a huge impact in quality of care and helping to target treatments to the right problem.

THINGS TO BRING WITH YOU (Virtually or in Person) TO YOUR FIRST BEHAVIORAL HEALTH APPOINTMENT

First and at the top of the list, after introducing the individual, introduce the mental health provider to everyone the individual is working with. This can be a list with phone numbers, and the people who know the individual best should accompany the individual to the appointment, if possible. One great thing about telemedicine is that members of the care team can attend an appointment from different physical locations. An individual’s care community can be so tight-knit and so familiar to those within it, that it can be easy to forget that such understanding is not a priori, and us providers will need to get to know the lay of the land. 

Even when a psychiatrist is savvy and works regularly with people with I/DD, they may not be familiar with the culture of an agency or group home providing services, what staff fulfills needed roles, or how nursing participates in care. Regulations may vary from state to state, and a psychiatrist may not be familiar with some of the rules and regs guiding how care is provided, especially if the individual lives in a different state. Different agencies sometimes interpret rules differently and have different internal policies regarding medications and behavioral supports available, so helping us become familiar with the care team and the agency culture can be of great benefit. Contact information for, and even better, participation of, the person’s house or agency behavioral clinician (in the setting of group homes and agencies utilizing them) can help the sometimes disparate psychological and psychiatric teams integrate a care plan.

For individuals who live at home with their families, or alone with supports, the need to get to know the care team and family dynamics are the same, and the need for comprehensive medical information remains.

A list of all the individuals’ different physicians and care providers can help us coordinate care when needs are complex. When utilizing pharmacologic therapies, it is essential that the right hand knows what the left hand is doing, so-to-speak, and communication can prevent medication errors or interactions.

In my own practice, I present problems with mood and behavior as a puzzle. Working in the general population, there are an equal number of pieces and different complexities, however when we are working with people with I/DD, everyone in the team has a piece of the puzzle that can help us see a clear picture of what’s happening. If an individual doesn’t use words to communicate, then it’s our job to find ways to listen and understand. The other people that have pieces to a puzzle need to be available to us. In residential settings, it is often imperative to have contact information for the house managers, the staff members who know an individual best along with family contacts so everyone involved in treatment can participate.

For individuals whose families are a large part of their lives, they can often hit the ground running since a dedicated parent or caregiver can provide invaluable care coordination simply by providing clear and accurate information. A dedicated parent can help make sure we have the information we need to be able to determine when medication is needed, when separate medical evaluation is appropriate, and can help us understand what a behavior is communicating.

For initial psychiatric or neuropsychiatric appointments, a current and accurate medication list will be essential. A complete medical, surgical and developmental history will allow us to understand someone’s physical needs. If medications were prescribed for mental health treatment in the past, a list of prior trials, when the medications were prescribed, and at what doses, will be very helpful. Understanding someone’s sleep habits, dietary needs, motor problems and even their bowel regularity will not only help us understand an individual better, but also will help us monitor and avoid any potential side effects to medications.

A copy of any prior IEPs, behavior plans, neuropsychological testing and medical records, prior EEGs and brain imaging (copies of head CTs and brain MRIs) can help us understand differentiate between causes of behaviors and can help us see a comprehensive picture of an individual.

In the setting of psychotherapy and nonpharmacologic behavioral care, while medical records may not be part of that person’s care to the same extent, the same team-based, multidisciplinary set of information will be helpful when available to the therapist. When someone is able to communicate easily with words or has a less significant intellectual disability, they may be able to utilize resources that are targeted to the general community without any difficulty, however community and team involvement can nonetheless be utilized.

SELF-CARE, RESOURCES AT HOME:

With the first wave of cases and implementation of COVID-19 related restrictions, families and provider agencies adapted schedules and switched to home or remote programming to maintain a sense of regularity. Utilizing online or remote day programming with familiar staff helped mitigate feelings of loneliness and isolation. Many of the same tools and techniques that were used in coping with the first wave of shutdowns will still apply as we hunker down for the long Winter ahead, awaiting our vaccines.

Resources for individuals in the home setting for self-care and mindfulness are numerous and varied as to be impossible to cover in a single article. Nonetheless, as a template for coping during this time, families and caregivers are the best resources and the greatest experts on the needs of an individual, second only to the individual themselves. 

Maintaining regular sleep can be very helpful. The natural tendency when spending more hours indoors and when individuals aren’t getting up for work or activities is to late-shift, where people sleep later and later throughout the day and fall asleep later and later at night, leading eventually to day/night reversal which can create anxiety and drive behavioral dysregulation. Limiting screen time 2 hours or so before bed can avoid reinforcing this pattern, and therapists and behavioral clinicians can help with sleep hygiene, often without the need for pharmacotherapy3. If the person can maintain some physical activity with video game systems such as Wii, or dancing to music or appropriate YouTube videos, there are clear benefits in mitigating anxiety4. Adapting schedules and maintaining a sense of routine can be among the most powerful tools in managing the problems of adapting to COVID-19 restrictions.

CONSIDERATIONS AMONG THOSE DIRECTLY AFFECTED BY COVID-19

Among individuals who have been directly affected by COVID-19, either from being ill themselves or from the loss of loved ones, there are additional considerations of trauma.

Loss and grieving can be experienced and expressed in a variety of ways, and can lead to poor mood, decreased appetite, changes in sleep and emergence of old problematic behaviors. Getting used to the absence of a loved one can take up to a year, and for individuals who have special difficulty adapting to change, recovering from these losses may take even more time. Seeking help from a professional can help to differentiate normal grief and bereavement from complicated grief that may need pharmacologic supports, and can help provide personalized adapted tools to move through grieving5.

Among those who have been ill with COVID-19, there may be some cognitive or neurologic changes from the virus itself in the form of strokes caused by the disease, periods of hypoxia or lack of oxygen, in addition to the fact that evidence is emerging that COVID-19 can affect the brain itself,6,7 independent to the potential trauma of a COVID-19 hospitalization. When an individual with I/DD is hospitalized with COVID-19, there are now protections in place to ensure that hospitals allow caregivers or designated staff or family to accompany them during the stay. Even with this consideration, the trauma of illness itself, coupled with the unfamiliar situation of being in isolation rooms cared for by medical teams in gowns, masks and whose expressions can’t be read, can add to the trauma of hospitalization. 

The possibility for post-traumatic stress disorder among individuals with I/DD after illness with COVID-19 is very real, and earlier treatment can help mitigate some of the long-term symptoms. Nightmares, new anxiety and avoidant behaviors, resurgence of old problems and disruptions in sleep can be some of the most obvious and earliest responses to the trauma of a COVID-19 admission. 

With a team approach, those of us who provide mental health care for I/DD can help the community move through and recover from this impossible time. We stand at the ready. 


ABOUT THE AUTHOR:

Benjamin Margolis, M.D. is board-certified in neurology and psychiatry, having completed the combined residency program at Brown University. He specializes in neuropsychiatric care of adults with I/DD in the New York Hudson Valley and is Senior Psychiatrist and Staff Neurologist at Access: Supports for Living. He attended medical school at the Albert Einstein College of Medicine after the postbaccalaureate premedical program at Columbia University, and holds a BFA from the School of Visual Arts in New York City. He is an active member of the American Academy of Developmental Medicine and Dentistry (AADMD) and is working to improve behavioral and mental health care of individuals with I/DD on local, state and national levels, along with serving on the Health Advisory Board for Special Olympics New York for the Strong Minds Program.


References

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5. Alcedo Rodríguez MÁ, Cristóbal Fernández L, Gómez Sánchez LE, Arias González VB. Evaluating the characteristics of the grieving process in people with intellectual disability. J Appl Res Intellect Disabil. 2018 Nov;31(6):999-1007. doi: 10.1111/jar.12454. Epub 2018 Apr 23. PMID: 29683230.

6. Steardo, L., Steardo, L. & Verkhratsky, A. Psychiatric face of COVID-19. Transl Psychiatry 10, 261 (2020). https://doi.org/10.1038/s41398-020-00949-5

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