November 20, 2020
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  National Leaders in the Mental Health Aspects
of Intellectual and Developmental Disabilities
Friday Feature
Interview with a Family Caregiver
As we continue to celebrate National Family Caregiver Month, CSS recognizes the gaps that exist for families as they seek mental health services. The recently published study we shared last week on family experiences identified gaps in crisis services, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training (Holingue, Kalb,  Klein, & Beasley; 2020). Despite these gaps, families continue to embody love, knowledge, and perseverance as they support their loved ones.
This week, CSS Director of Training Beth Grosso interviewed Susan Klick, a caregiver and member of the START National Advisory Council and National Research Consortium on IDD-MH, about her experiences and perspectives on caring for her son James. Susan is pictured above with her children James and Jennifer.

From your perspective, what is the most important thing for providers to keep in mind about caregivers?

Family caregivers care about their loved one the most. They seek providers that are responsible, who they can trust with their loved one’s care, and who can keep them safe. The provider can always turn to the family caregiver if they have any questions about caring for their loved one.

 What are three strengths you see in family caregivers?

  1. They are experts on their loved one’s healthcare and health status. They know specific details about their loved one’s past health history.
  2. The family caregiver is always responsive to their loved ones’
    needs. The individual knows they have the security of their family’s love and support at all times.
  3. The family caregiver always provides assistance with day to day tasks and personal care for their loved one. The family caregiver is their loved one’s best advocate.

Can you tell me about a time when you felt empowered by a provider or felt that providers really understood your perspective?

I had a situation where my son was receiving care from a provider in a residential setting with 24 hour care. They did not watch what he was eating and he gained an additional 40 pounds. I had huge concerns about his physical health and they were not listening to my request to watch his diet in order to prevent other health issues that could arise. Soon after, I had an opportunity to select a different residential provider. One of the interview questions was how they would handle healthy eating. They provided that information. I switched to the new provider and knew I made the right choice many years later because he has healthy meal plans and his weight has continued to be within the proper range. We have continuous communication and reporting on many levels. He is happy and leading a healthy life style.

How can providers best support family caregivers during the COVID-19 pandemic?

Communication with family caregivers is a key factor. Let the family know how they are keeping their loved one safe and healthy. Provide technical communication for the individual and their family caregivers through zoom, facetime and  phone calls.

Our partnership with families and service recipients is one of the core values of the START model and we could not and should not do the work without them. We thank Susan for taking the time to speak with Beth and for all the ways she partners with START!

Holingue, C., Kalb, L. G., Klein, A., & Beasley, J. B. (2020). Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START. Intellectual and developmental disabilities, 58(5), 379–392.
Employment Opportunities
Part-Time Employment Opportunity: ASSOCIATE PROJECT FACILITATOR

Center for START Services Associate Project Facilitator is responsible for ongoing consultation and coaching to the assigned START Program as directed by the Lead Project Facilitator. This can include frequent video and phone meetings focused on programmatic and clinical development of the team as well as therapeutic coaching activities. The Associate Project Facilitator works collaboratively with the Lead Facilitator, Document Reviewer, and Director of Quality Assurance and plays a key role in assisting START Programs prepare and train their team members. This position provides training and technical assistance to START programs providing START therapeutic coaching, including but not limited to the provision of START Therapeutic Coaching training groups, manual review and revision, and technical assistance. This is a part-time position (~3 hours per week).


Learn More and Apply
Professional Development Series
MHIDD Course for Mobile Crisis Responders
Registration Open for Next Course Beginning on January 5, 2021

Registration is now open for the next MHIDD training course for Mobile Crisis Responders. The course, which spans 6 sessions from January 5 - February 9, 2021, provides an overview of mental health diagnoses in people with IDD, assessment considerations, crisis response, and recommendation/disposition planning. Registration for the course is $149 per person. 
Learn More and Register
MHIDD Course for Care Coordinators and Case Managers 
Registration Open for Next Course Beginning on March 15, 2021

This 6-week online course is designed to improve knowledge for care coordinators and case managers to successfully support children and adults with IDD and mental health service needs and their families. Speakers will include family members and people with lived experiences along with experts in the field. Dr. Joan B. Beasley will demonstrate how the information provided can be applied to improve the ability of care coordinators/case managers to identify service and support needs, and monitor outcomes for individuals and their families. Registration for the course is $299 per person.
Learn More and Register
Have a happy and healthy weekend,

The Center for START Services

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Institute on Disability at the University of New Hampshire