Often I receive frequent calls from single parents who love and care for children with severe multiple impairments (i.e. a cognitive impairment coupled with physical impairments) in need of affordable housing; experiencing homelessness, reliable transportation; experiencing a lack of communication from a county case worker approving transportation assistance, active insurance; experiencing financial hardship from a Title V provider unwilling to pay their bills, access to specialized child care and/or an appropriate education placement for their child, experiencing a fight for their child’s existence in the least restrictive educational environment all while searching for full-time employment. In most cases, families who love and care for children with severe multiple impairments are juggling their time in efforts to balance out life’s necessities while advocating against governmental agencies and local public school district who reject and deny access to programs that can potential improve their child’s quality of life.
It has been from my own experience and while working with other families in Michigan that maintaining our child’s health, restoring dignity to our lives and navigating systems has caused many parents to suffer blindly from Caregiver Stress Syndrome. Due to the constant nature of 24/7 care of a child with severe multiple impairment, most of us fail to acknowledge the condition of our own health and need for self-care. Depending upon which Michigan region, a family resides will dictate the level of community and home based support, specialized care available and/or a family’s access to care.
Caregiver Stress Syndrome is a term used to describe the physiological and psychological challenges experienced as the result of chronic stress due to ongoing caregiving activities. Caregiver Stress Syndrome are actual physiological, psychological and emotional symptoms that can result from the ongoing emotional strain of caregiving for a loved one, or attending to the all of the needs of a child or adult with disabilities.
Locating some help and some respite care can be very difficult in Michigan and further contributes to the emotional strain and stress for families who love and care for children with severe multiple impairments. Not to mention, the Direct Care Service Industry presents a high rate of turnover, low pay and frustrated workers that are undervalued in the healthcare system and may leave some children with severe multiple impairments at risk for child abuse and neglect which is commonly sited as caregiver abuse.
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