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Integrating Formal and Informal Resources for Parents with IDD in Healthcare Settings

Welcome to �this eLearning module:

This module is part of TASP’s series on Working Effectively with Parents with IDD in Healthcare.

www.achancetoparent.net

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Welcome!

This training module illuminates the pivotal role of both formal and informal support systems for parents with Intellectual and Developmental Disabilities (IDD), emphasizing how healthcare providers can effectively coordinate with community resources.

Participants will gain insights into the benefits of informal supports, navigate the challenges and advantages of formal supports, and learn collaborative strategies to enrich the array of available resources in their region, fostering seamless coordination between healthcare providers as a medical home.

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Objectives�

At the conclusion of this module, you will:

Understand the significance of formal and informal support networks for parents with IDD.
Explore the benefits of informal support systems.
Analyze formal support services available to parents with IDD.
Identify coordination strategies for healthcare providers.

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IDD and Parenting

What is IDD and how does it impact parenting?

Intellectual and Developmental Disability = IDD
Individuals with IDD can have general difficulty with learning and adapting
4.1 million parents with disabilities in the United States (Powell, R.M., Parish, S.L., & Akobirshoev, I., 2017).
Being a parent is a fundamental right
Individuals with IDD may not self-identify

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Defining Support Networks

For parents with IDD, and most families, supports are key to ongoing success. They may need daily support provided by those in their life on a regular basis, or more formal support provided by paid providers.

There are generally two kinds of support:

Formal Supports

Informal Supports

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Understanding Formal & Informal Supports

Formal Supports

Are provided by an organization who may . . .

Meet family needs in employment, parenting, child development, program management, domestic skills, transportation, money management, mental health, health care and education.

Informal Supports

Are provided by a member of the family, or the general public known to the family who may . . .

Help with system navigation, shopping, reducing social isolation, giving rides, babysitting, organizing, making repairs, getting resources, finding resources and problem solving.

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Defining Support Networks

Formal Supports: Formal supports are (most often) paid supports provided by professional, trained employees. These tend to change as staff come and go. Even if the parent is not the one paying for the support, the person is paid for the work (school staff, medical professional, mental health clinician, disability support worker, etc.)

Informal Supports: Informal Support are done by unpaid people that can be found naturally in the family’s world. Most parents with IDD need help to find and develop them. Self-advocates tell us that informal supports are best since they tend to have more longevity and less turnover.

Can you think of one formal and one informal support that you’ve provided to families?

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Formal vs. Informal Supports

While there are benefits to both kinds of supports, informal supports can be longer lasting and more emotionally fulfilling.

A 2018 study by Lightfoot et. al found that parents with IDD “greatly preferred informal supports, which they found to provide emotional support and be flexible, over formal supports, which they found overwhelming and confusing.”

In your own life, which type of support do you find most helpful and why?

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Benefits of Informal Supports for Families

Emotional Benefits of Informal Supports

Informal support networks provide emotional reassurance and companionship to parents with IDD.
They offer understanding, empathy, and a sense of belonging, fostering emotional well-being.

Social Benefits of Informal Supports

Informal networks offer opportunities for socialization and peer interaction, reducing isolation and loneliness among parents with IDD.
They provide a sense of community and solidarity, promoting social inclusion and participation.

Practical Benefits of Informal Supports

Informal support systems assist with daily tasks, transportation, and childcare, easing the burden on parents with IDD.
They offer practical guidance and assistance, enhancing parental confidence and competence.

Informal Supports play a vital role in promoting resilience and positive parenting outcomes.

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Advantages of Informal Supports

Families note they prefer informal supports over formal supports because informal supports:

Are less confusing, less expensive and more flexible.
Help to decrease the stress of parenting and system navigation.
Can help with communication and follow-up during and after care.
Can benefit both parents and children
Stay with the family over time

Article: Parental Supports for Parents with Disabilities: The Importance of Informal Supports Elizabeth Lightfoot, Traci LaLiberte and Minhe Cho., 2018 Child Welfare. https://www.jstor.org/stable/48625524#:~:text=Par%2D%20ticipants%20greatly%20preferred%20informal,working%20with%20parents%20with%20disabilities

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How can you help families set up informal supports in their life?

Family member that helps with childcare
Neighbor who drives family to medical appointments
Friends that help with emotional support, errands, or anything!
Carpooling or shared childcare (not paid)
Another parent at the park who becomes a friend

Informal Supports can include:

What kind of informal supports might help a family who has a child with ongoing healthcare needs?

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How can you help families set up informal supports in their life?

Some of the best sources of informal supports are those that are around us every day. Can you think of informal supports that may already be in the life of a parent with IDD?

Immediate and extended family members
Neighbors, friends, and members of a house of worship
Service groups such as scouting, or boys and girl’s clubs
Parents of children with disabilities
Facebook groups or online groups (this may require support or supervision)
Volunteers from adaptive recreational programs
Community members (e.g. hardware store personnel, bus drivers, police, student-led support groups, mail person, hair-dressers, etc.)
Foster care and adoptive families (for the parent)

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Benefits and Challenges of Formal Supports

While informal supports may be preferred and should be a larger part of the family’s life, there is often a need for formal support.

Benefits of Formal Supports

Formal support services provide specialized expertise and tailored interventions to meet the unique needs of parents with IDD.
They offer access to resources, funding opportunities, and legal advocacy, enhancing parental empowerment.

Formal supports can also come with challenges, including:

Limited availability, eligibility criteria, and bureaucratic hurdles.
Navigating the complex system of formal supports can be overwhelming for parents with IDD.
Providers often change, leaving the parent to start over.

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How can you help families set up formal supports in their life?

Paid childcare
Housecleaning
Medical Providers
Mental Health Providers
Healthcare Navigator

School staff
Disability Support person (if the parent has one)
Early Intervention Program
Social Worker

What kind of formal supports might help a family whose child has ongoing medical needs?

Formal supports can include:

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How can you help families set up formal supports in their life?

Formal support services available for parents with IDD in your community may have individualized programs of service or offer in-home supports that can assists parents with IDD to get information, manage their lives and keep their children safe.

You will need to become familiar with an array of formal supports available in your region. Some regions have intra-agency coordinating committees that act as a one-stop informational resources. If you are in an office or a hospital, this may be one person who coordinates and keep this information for families.

Referring a parents with IDD to a formal support organization or giving them a number to call, or a flier, rarely works.

Why do you think this is? (They may not have the skills or confidence to follow up.)
What could you do instead to ensure they get connected? (Getting their permission to contact someone on their behalf, have someone in the office initiate the connection with parent permission, follow up with the parent to see if they’ve called and make sure they understand why they should call, etc. )

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Care Coordination

This is often where Care Coordination comes in. Parents with IDD are likely to need extra support in the form of care coordination.

When health care and other providers work together and share information, the families needs and preferences are known and communicated at the right time to the right people, and the information is used to provide safe, appropriate, and effective care for parents and their children.

Effective care coordination leads to outcomes of optimal health and wellness.

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Successful Care Coordination

Successful care coordination requires several elements:

Easy access to a range of health care services and providers.
Good communications and effective care plan transitions between providers.
A focus on the total health care needs of the patient and their family.

Healthcare providers can serve as medical homes for parents with IDD, coordinating care and support services.

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Top Supports Needed by Parents with ID

What do you see as the top supports needed for parents with IDD?

Informal, community supports
Parenting classes or in-home support
Housing help
Child-care assistance
Respite care
Transportation
Wrap around care teams
Early intervention
What else?

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Relationships

Why does it help to know what’s in your area? Developing relationships with individuals or groups that may offer supports and services increases your ability to effectively set up supports for a family. You can connect with:

Peer-to-Peer support (Family Voices, Federation of Families for Children’s Mental Health, a local chapter of The Arc, DD Council, Self-Advocate Group).
Parenting-support (Early intervention, Head Start and Early Head Start, Adult Service Providers)
Parenting-education (The Arc chapters, County Extension Agencies, Community Action Programs, School resource coordinators)
System Navigation (Family Voices, Centers for Independent Living, County Medicaid Programs, Parent Training and Information Centers)

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Coordination Strategies for Healthcare Providers:

If the family needs healthcare or has healthcare issues, link them with a local healthcare system navigator.
Engage in community mapping in your region to identify an array of formal providers and learn what services they offer.
Assist the family to complete a map of their informal support contacts and discuss who might help with different needs.
Start a community of practice with local healthcare professionals to share ideas and support services. This can be done remotely!
Ask the family what type of support helps them given their unique learning needs.
Limit the number of different providers coming into the family home and assist others to share expertise with one primary provider.
Obtain materials on health information written in plain language.

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��Case Study

Let’s explore how a parent with Intellectual and Developmental Disabilities (IDD) might utilize formal and informal supports when facing challenges understanding a new medication prescribed for their child with medical needs.

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Case Study

Background:

Parent: Mark, a 40-year-old man with moderate IDD, has a 10-year-old child named Alex who has asthma.
Informal Support: Mark's neighbor, Keysha, has been a trusted friend and provides occasional assistance with household tasks.
Formal Support: Mark is enrolled in a local disability support program that offers counseling and advocacy services.

Scenario:

Alex's doctor has prescribed a new medication to manage his asthma symptoms.
Mark is confused and overwhelmed by the doctor's instructions regarding the medication's dosage, administration, and potential side effects.
Mark struggles to comprehend written information provided by the pharmacy and feels anxious about giving the medication to Alex.

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Think About…

How might Mark utilize informal support (Keysha) in understanding and managing Alex's new medication?
What challenges might Mark face in comprehending the medication instructions, and how can his formal support program assist him in overcoming these challenges?
What communication strategies could healthcare providers use to ensure Mark's understanding of the medication's purpose, dosage, and potential side effects?
If Mark had no formal or informal support, what might happen with Alex’s new medication?
If Mark didn’t have a formal support program, who could you refer him to for ongoing support?

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Congratulations!! �You’ve finished the course. �Check out the Resources tab�

Author: Cathy Haarstad, Chelsea Tighe, Colleen Downes –TASP

Reviewers:

Lindsay Brillhart

Ivanova Smith

Quiana Mayo

Jamie Junior

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Additional Resources - Organizations

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP conducts training for professionals and supports parents with IDD to advocate and share their stories: https://achancetoparent.net/

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/

Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/

Self Advocates Becoming Empowered (SABE): National self-advocacy organization. https://www.sabeusa.org /

Institute for Exceptional Care (IEC) works to make healthcare better and safer for people with intellectual and/or developmental disabilities. https://www.ie-care.org/

The National Center for Disability, Equity, and Intersectionality’s goal is to lead the nation’s charge to identify and reduce life-limiting inequities in healthcare, community living, and justice for people with disabilities. https://thinkequitable.com/

American Academy on Developmental Medicine and Dentistry is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD).: https://www.aadmd.org/

National Council on Disabilities, Rocking the Cradle Report on Parents with Disabilities:

https://www.ncd.gov/publications/2012/Sep272012

The Arc of the United States: https://thearc.org/position-statements/parents-with-intellectual-developmental-disabilities/