Other Important Considerations
Parents with Disabilities
SUPPORTING FAMILIES' STRENGTHS
Parents with disabilities may need accommodations to support and facilitate their full and active participation in discharge planning.
This section discusses important considerations for collaborating with parents with disabilities during discharge planning.
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Like any parents of preterm or medically-fragile babies, parents with disabilities may feel overwhelming emotions and need time to acclimate to the NICU environment. Additionally, they may be feeling extra pressure or stigmatization because of their disability status.
It is important for providers to have awareness of their own biases about people with disabilities, and to not assume that deficits in caregiving ability are due to the parent’s disability status.
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Parents with disabilities will be most comfortable with providers whom they trust and who view them as competent and capable of taking care of their child (with or without supports).
Talk to the parent about any barriers to infant care that you perceive and look for solutions together.
IMPORTANT: A parent with disabilities’ ability to care for their infant should never be evaluated in an environment that is not fully accessible to them. This includes the presence of adaptive baby care equipment if needed.
Ensure that parents with disabilities have sufficient space, time, and support to master technical infant care skills. Whenever possible, provide the most appropriate support. Ask parents with disabilities about their needs and preferences.
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Ask parents with disabilities about their accessibility needs. More often than not, people with disabilities are the experts about their own needs and conditions.
Parents with disabilities often report that they are viewed as incompetent due to their disability status. It is imperative that we meet these parents where they are with their parenting skills and help them build self-efficacy, just as we would with parents without disabilities.
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For some parents with disabilities, facilities that only meet minimal ADA standards may not adequately meet family’s needs. Whenever possible, work with the parents to find accessibility solutions that allow them to participate fully in their infant’s care and facilitate bonding, especially skin-to-skin care.
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The National Research Center for Parents with Disabilities at Brandeis University is an excellent resource for the current state of the science on disabled parenting for providers and resources for social work. The Center also produces numerous tip sheets, videos, and other informative resources for parents with disabilities.
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​No parent should fear seeking appropriate mental health care. But many do. Be aware that parents with visible disabilities may be reluctant to disclose “invisible disabilities” or mental health diagnoses (i.e., postpartum depression or anxiety) out of fear of further stigmatization. Mental health resources should be provided to these parents as well as assurances that they will be supported and affirmed when seeking appropriate care.
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Like many parents, the parents with disabilities may have challenges with lactation, pumping, and breastfeeding. Furthermore, options for lactation support for parents with disabilities may be limited because not all lactation consultants have experience working with parents with disabilities. Breastfeeding, by design, is an inherently accessible way to feed an infant. Extra time may be needed to help the parent-infant dyad with positioning and latching, especially if the parent has fine motor disabilities. Explore alternate feeding positions and try as many positional aids (i.e., lactation pillows, slings) as possible and appropriate. The lactation consultant should take extra time to ensure that the family has pumping equipment that works for them. Pumping bras are excellent tools for accessible pumping.
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Supporting Family Health Literacy
Ask parents with disabilities about their preferred method for communicating discharge information and honor those requests. For example, utilize multimedia and multimodal discharge teaching tools and instructions. Do not rely solely on written material to meet communication and health literacy needs.
When possible, arrange for American Sign Language (ASL) or other interpreters in advance. Note that a parent in need of interpretation may wish to have a support person interpret instead of a staff interpreter.
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Accessibility
Parents with disabilities, such as those with intellectual or developmental disabilities, may need extra time at discharge to have their questions answered.
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Parents with sensory sensitivities to noise or busy environments may wish to have the discharge discussions in a quieter place that has fewer distractions, such as a conference room.
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Ensure the facilities meet Americans with Disabilities Act (ADA) standards and that they can be modified to accommodate and support parents with disabilities. Make changes, with the parent’s input, as needed to support inclusion of all primary caregivers’ presence in both the patient’s room and any place where instruction is given or information is shared.
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Ask caregivers if they would like help from Adult Occupational and Physical Therapists in adapting caregiving tasks. This is also an appropriate time for OTs and PTs to evaluate any mobility aids that the parent may use and make changes to that equipment to make parenting tasks easier.
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Home Environment
Ask parents with disabilities if they need assistance with home modifications. Because states vary greatly in the home modification services they provide for people with disabilities, it is important to find out what home modification services are available where they live.
Some people with disabilities are already living in appropriately accessible housing and may only need accessible baby equipment (e.g., wheelchair-accessible cribs or baby carriers).
When the home environment needs to be modified to be accessible, inquire with your state’s Office of Disability Services (or other applicable agency) about funding options. For example, some states provide zero interest home modification loans for accessibility-related home modifications. Also consult with non-profit agencies and local advocacy groups (e.g., Parent-to-Parent, Easter Seals, United Way, etc.) to determine if funding is available to make needed changes within the home.
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Caregiver Ability
Confirm that the caregiver is able to perform technical infant care skills on their own or with support. Ensure that there are sufficient supports in place for a safe discharge.
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Because the specialty care team providers can be a source of information about the parent’s abilities, consult with the specialty care team.
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Make sure lactation consultants and other support service providers have the needed skills, training, and expertise to work with parents with disabilities. Use ADA-certified specialists when clinically indicated.
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