Considerations for Counseling Clients With Intellectual and Developmental Disabilities

Jacob Ulczynski, NCC, CHP, LPC, is the Deputy Executive Director of Alamo Area Council of Governments (AACOG), the local intellectual and developmental disability authority (LIDDA) for Bexar County, Texas, and the Area Agency on Aging (AAA) and Aging and Disability Resource Center (ADRC). He and his staff work to ensure that more than 4,500 individuals with intellectual and developmental disabilities (IDDs) in Bexar County can remain in their least restrictive setting and live their best lives.

This month he shared his insights on counselors enrolling as Medicare providers, how this may affect clients with disabilities, and special considerations when working with this population.

Can you share your general thoughts on the recent inclusion of counselors and marriage and family therapists as providers in Medicare Part B?

The inclusion of counselors and marriage and family therapists as providers in Medicare Part B is a substantial achievement that significantly increases access to outpatient mental health services for persons who are aging or have a disability. It is no secret that we face an extraordinary need for mental health services in a country where one in four adults struggles with a diagnosable mental illness. The inclusion of these two professions will increase the number of available mental health providers and is an important step toward professional parity. Medicare, as the largest health care payer in the nation, sets the precedent for both private health care payers as well as many state Medicaid payers.

How will this impact not only older adults, but also Medicare recipients with disabilities?

Most importantly this change will significantly increase the number of mental health providers available to older adults and people with disabilities. Previously, Medicare only recognized psychiatrists, psychologists, clinical social workers, and psychiatric nurses as providers for mental health counseling services. As a result, people seeking mental health services were limited to seeing a prescriber or clinical social worker, when a fuller array of services may have been appropriate. This change will allow older adults and people with disabilities to seek out services best suited for meeting their mental health needs.

In addition, just like not every primary care physician is a good match for every patient, every mental health clinician is not a good match for every person seeking care. The opportunity for the person to choose the provider who they believe is the best suited to serve them is important to the person’s overall well-being.

How will this inclusion affect the current system of care?

The change will not be a panacea for county-based behavioral health systems, but I do think it has potential to have significant impact for certain populations. For example, it creates opportunities for county behavioral health systems to partner with nursing facilities, assisted living facilities, and Area Agency on Aging congregate meal sites to offer counseling and other mental health services in places where older adults and people with disabilities with complex needs congregate as they are aging in place. This has the potential to be a new resource for county-based systems in addressing the whole person and improving outcomes for individuals with co-occurring conditions.

Though the majority of the people with mental illness do not have Medicare, my experience is that a good number of the developmental disability population with Medicaid also has Medicare. Mental health counseling services provided by a counselor or marriage and family therapist were previously covered by Medicaid in many states, but the addition of Medicare as a payor source for counselors and marriage and family therapists helps address the behavioral health professional shortages in the workforce. The change in Medicare providers creates the opportunity to increase choice and availability of counseling services to this segment of the developmental disability population. Though studies vary significantly, a conservative estimate is that 40%–50% of persons with developmental disabilities also struggle with mental illness, so the need for mental health services for this population is significant.

As a result, I see a great potential for increasing access to mental health services for people with a developmental disability; however, this potential will be tempered by the same clinical training issues that we see with other clinical specialties in regard to persons with developmental disabilities, e.g., lack of exposure to the population, adapting therapeutic modalities to the ability of the person to participate.

What special considerations and sensitivities should counselors keep in mind when working with clients with disabilities?

It is important for counselors to remember that above all, a person with a disability is just that, a person. They have the same wishes, dreams, desires, concerns, fears, and emotional needs as any other person in society. Far too often I have seen counselors and other clinicians hide behind ethical and competency concerns and use these concerns as justification to refuse to serve a person with a disability, especially a person with a developmental disability. I would argue that it is more detrimental to the person for the clinician to refuse providing service and have the person go without when there are no other willing mental health providers in the area, than proceeding with therapy when you as the clinician are uncomfortable. It is important for a provider to remember that they may be the very best option available to a person at that point in time. The support and help they can provide in the moment a person is reaching out for help is critical, even if they ultimately decide to help the client find another therapeutic support to transition to for continuation of services.

How may a disability affect a person’s mental health? How do these clients typically present in session?

An individual’s disability is only a small part of what might be affecting their mental health and bringing them to seek counseling. Though it is important for the therapist to be aware of the disability and when the onset of the disability occurred, especially in the case of a recently acquired disability, it is just as important for the therapist to be aware of trauma and utilize a trauma-informed approach. Persons with disabilities are often overlooked in American society and face issues such as loss of choice, loss of decision-making, and the unintentional loss of rights as well-meaning caregivers insist on what they believe is best for the person. In session, these issues might commonly present as grief/loss, depression, anger management, and end of life issues—all very common clinical engagements that a therapist would also see in geriatric populations.

What are some of their most common barriers to care?

The most common barriers to care I have seen are issues like transportation. Many of us take for granted the ability to hop into a car and drive to the doctor or therapist, but many people who are aging or have disabilities do not have that luxury. Though technological solutions that facilitate telehealth appointments have certainly increased access to care for mainstream populations, persons who are older or have disabilities may be less willing to adopt technological solutions to achieve access to their clinician.

What challenges may counselors face when working with a client with a disability, and how might they navigate them for the best outcome?

Challenges might include things like adequate training to recognize how a person with disabilities might present differently in session and to understand the variations in symptomology for mental health conditions in this population. Particularly for persons with developmental disabilities, it can be difficult to determine which symptoms may derive from organic origins, which symptoms may derive from psychiatric origins, and which symptoms may derive from environmentally triggered behaviors. As a result, it is important for counselors to be open to working as a team with the person’s primary care physician, psychiatrist, and other specialists, as appropriate.

Challenges might also include understanding the county-based behavioral health systems of care the person is receiving. Counselors are likely familiar with nursing facilities, but how many have heard of an intermediate care facility (the nursing facility alternative for persons with intellectual and developmental disabilities) or a 1915(c)-waiver program? These care systems are commonly funded by Medicaid and vary significantly from state to state. Additionally, are counselors familiar with their local homeless shelters and the cultural dynamics of homelessness? It would be beneficial for counselors to become familiar with these systems in their state of practice.

Are there any specific evidence-based treatment modalities/approaches you prefer when working with clients with disabilities?

I prefer to utilize cognitive behavioral therapy (CBT) and dialectical behavior therapy approaches, especially when working with persons with developmental disabilities. Some individuals in this population may struggle to understand or process abstract concepts but can process concrete thoughts and ideas. CBT approaches also lend themselves to being more easily adapted to the understanding of a person with diminished cognitive ability.

How can counselors ensure that they are providing disability-competent and culturally competent counseling (using proper language, etc.)?

The best way that a counselor can ensure they are providing disability-competent and culturally competent counseling to a person with a disability is to be person-centered. In regard to language, this means putting the person first. Examples: 1., “John is a person with autism” rather than “John is autistic” or 2., “Mary uses a wheelchair to move around her environment” rather than “Mary is wheelchair bound.” However, the concept of being person-centered and the correct “culturally competent language” is ever evolving. The best advice I have is to engage in an open discovery discussion with the person about their language and what terms and phrasing they use. The counselor can then meet the person where they are by matching the language and phrasing used by the person.

Is there any additional advice you would give to counselors who are interested in learning more about working with this population?

Be open to learning, but don’t be afraid to ask questions. Above all, remember that this is a person seeking help.

Are there any related resources or special trainings you’d recommend?

Some of the trainings that have been helpful in improving my understanding of the needs of people with disabilities are:

• Person Centered Thinking Practices
• Trauma Informed Care
• Cultural Competence
• Strength Based Practices
• Positive Psychology
• People First Language
• Dignity of Risk training

The links provided are intended as resources and are not intended as an endorsement of any one product or agency.

Jacob Ulczynski, NCC, CHP, LPC, is a mission-driven visionary leader with over 15 years’ experience supporting persons with intellectual and developmental disabilities (IDD) to live, work, and experience their best lives through leadership, advocacy, partnerships, collaborations, and subject matter expertise. He holds a master’s degree in mental health counseling and a bachelor’s degree in psychology and he is a Licensed Professional Counselor, Certified HIPAA Professional, and National Certified Counselor NCC.