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Read moreNCSA Comments on the 2022 National Strategy to Support Family Caregivers
NCSA submitted the following comments in response to ACL’s call for comments on the 2022 National Strategy to Support Family Caregivers.
Alison Barkoff
Principal Deputy Administrator
Administration for Community Living
330 C St SW
Washington, DC 20201
Via email: Alison.Barkoff@acl.hhs.gov
November 21, 2022
Re: NCSA comments on the 2022 National Strategy to Support Family Caregivers
Dear Ms. Barkoff and friends at the Administration for Community Living:
Thank you for giving us this opportunity to comment on the 2022 National Strategy to Support Family Caregivers. National Council on Severe Autism represents the interests of individuals, parents, clinicians and caregivers affected by severe forms of Autism Spectrum Disorder (ASD or autism) and related developmental disorders. In our population, ASD, alone or with comorbid conditions like intellectual disability, is often a debilitating or even ruinous disorder, as it can compromise higher-order cognitive processes, including language, social comprehension, abstract thought and learning. According to the CDC, nearly 60% of U.S. children with autism have significant or borderline intellectual disability (Maenner et al. 2021).
In addition to the impaired ability to engage in activities of daily living, many in this population have challenging behaviors, including aggression, self-injury, property destruction, and elopement, psychiatric and medical comorbities such as seizures. Due to pervasive functional limitations, these individuals are unable to live independently, and are incapable of earning a living. They typically require 24/7 support, for their lifetimes.
Autism rates, including rates for those most severely affected, have been increasing precipitously over the past three decades, with the CDC estimating that 1 in 44 children now have the disorder. While the reasons for the dramatic increase in autism rates have not yet been identified, the phenomenon has been well described across the country. For example, in California's Department of Developmental Services, the autism caseload skyrocketed 50-fold over the past 35 years, from about 3,000 cases to about 158,000 today. The vast majority of this population is under age 30, with ever-larger cohorts aging into a stressed and overburdened adult care system each year.
For this burgeoning population of dependent children and adults the preeminent issue is sufficient caregiving, both near-term and long-term, and this of course includes parents and other family members.
Many parents and family members in our community are not just caregivers, but extreme caregivers. They often must leave jobs and careers in order to devote themselves to the welfare of their loved ones. They often suffer financial distress, isolation, depression, chronic stress, trauma, and physical injuries. They routinely face discrimination in the community and the care system, with many barriers to accessing needed supports for their loved ones, such as in-home services, appropriate clinical care, and vocational services. And they bear the burden of immeasurable worries about who will care for their loved ones as they age and pass away.
The future for caregivers for children and adults with autism has grown into an issue of monumental national urgency. Having reviewed the 2022 National Strategy to Support Family Caregivers we would like to provide the following comments that we hope will be reflected in future revisions.
(1) It is important that the Strategy specifically call out autism as a major area of concern for national caregiving policy, just as the report specifically calls out dementia, for example. Autism is the fastest growing disability among U.S. children, and it is rapidly eclipsing other disabilities in our developmental disabilities (DD) systems. Autism already represents 42% of the DD system in California and is poised to make up half the system within a few years,
(2) The ACL Family Caregiving Advisory Council should include a representative from the National Council on Severe Autism to ensure the needs of this large and growing community are represented and addressed.
(3) We agree that a Needs Assessment Survey is critically important. It is imperative that we develop better data about the scope and nature of the dependent autism population, the health and welfare of their family caregivers, and the supports needed by those with autism as their relatives who are primary caregivers decline in ability and pass away.
(4) We agree that data development should include infographics about caregiving by the CDC and other agencies, representing data such as prevalence of family caregiving in autism, characteristics of caregivers (for example, age, socio-economic factors, income), and tied to the severity of needs of their dependent loved ones.
(5) The report makes reference to role of caregivers in supporting DD adults who engage in competitive, integrated employment (CIE), but makes no mention of caregivers who support adults incapable of achieving CIE — which is the norm in our autism subpopulation. This is plainly discriminatory, based on the functional abilities of the dependent loved one, and this discrimination in favor of only one sector of caregivers should be eliminated from the report. Adults who engage in non-competitive employment, volunteer work, or day programs surely deserve equal respect and support. It is simply reality to recognize that many adults with autism and DD cannot achieve CIE.
(6) We agree that family caregivers who are employed need stronger supports and accommodations from employers to remain employed whenever possible.
(7) Case management, as may be funded by state Medicaid programs, is vitally important to help family caregivers at all stages of their journey. We need robust case management that can ensure all adults disabled by autism have appropriate medical care, crisis services, support services, community services, and supported housing. This is a major issue that will intensify as the autism parent population ages.
We note that while the report makes multiple references to "linking family caregivers to information" about services, this is often an empty sentiment. If the services do not exist in reality, this is just lip service to the caregiver. The report must place more of an emphasis on the development and real accessibility to meaningful services and supports, and less on "information," "webinars," "toolkits" and the like.
(8) We agree that veterans who are caregivers need maximum support from the VA to ensure they have the resources to fulfill their roles.
(9) The physical and mental health of caregivers is very important. If they are not healthy they cannot provide quality care for their loved ones. Medicaid programs should fully cover the healthcare costs, as may be necessary, for family caregivers who devote themselves to the support of dependent, disabled loved ones.
(10) We agree that listening sessions are a good idea. We ask for a listening session by ACL with the NCSA audience to ensure that our concerns are heard and addressed.
(11) We strongly agree that Medicaid-funded in-home support programs should entirely eliminate any bias against family caregivers. Qualified family caregivers should be entitled to the same benefits and wages as those who are unrelated performing the same tasks, when caring for disabled adults or disabled children with extreme needs. The approval of 1915(c) HCBS waiver applications to pay family caregivers is very important.
(12) We strongly agree that it is urgent to increase, strengthen and support the paid LTSS and direct support workforce. Family caregivers can only do so much or last so long.
More work must be done to address recruitment, education, training, retention and career advancement of DSPs in all the states.
(13) Assisting family caregivers with financial planning is a very good idea. Perhaps this could be effectuated via the case management package, referenced above. Perhaps also consider more flexible use of ABLE accounts to address caregiver needs.
(14) We were very alarmed to see the issue of Guardianship receiving scant attention. Only "alternatives to guardianship" are mentioned in the list of federal actions, and only once. Guardianship (or conservatorship) is a vital tool to protect the legal interests of adults incapable of managing their own affairs. It goes without saying that most autistic adults in our community lack the legal capacity to make a delegation of authority via power of attorney or supported decisionmaking. The report must emphasize the vital importance of guardianship and the need to improve the support for, and monitoring of, guardians and conservators, particularly as these roles move from family members to professionals and unrelated parties.
(15) Another notable omission from the report is that parents will themselves need long-term care while they still bear the responsibility of caring for their disabled grown children. This is particularly acute in the autism field, as children with autism will for the most part outlive their parents (this is often not the case with other developmental disabilities). The longevity of the burgeoning autism population represents an unprecedented challenge for caregivers and this inevitable collision of care systems and must be explicitly addressed in the report.
We thank you for your consideration of our comments.
Very truly yours,
Jill Escher
President
Autism and Sleepless Nights on Vacation
“Aleks struggled because we were in a new place, nothing was familiar, and he was too excited thinking about the fun he was having to be able to wind down at night. While we understood his struggles, something had to change or our vacation was going to have to end early.”
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“Being sleep-deprived lowers the immune system and takes a toll on the body physically and emotionally. I never feel fully rested and have no idea what being fully rested would feel like.”
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“We've also struggled to identify why he wakes up in the middle of the night with potential causes being: Too hot? Too cold? Something to do with circadian rhythms? Too light? Too noisy? The list is endless.”
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“I’ve woken up to the sound of dishes breaking, walls being kicked and punched, and Jacob yelling vulgarities at the top of his lungs. I would jump out of bed as if the house was on fire and run to find him in this very sad and scary state of mind.”
Read moreAutism: The Nightmare of Life Without Sleep
This month our blog focuses on the torment of sleep deprivation in individuals with severe autism, and their families
By Jill Escher
There are various ways to torture a person. There’s whipping, “the rack,” painful electric shocks, needles, beatings, and so many other horrific methods. But another classic torture device is less bloody but plenty damaging: sleep deprivation.
Humans need sleep much like they need food and water, it’s a physiological necessity for both mental and physical health. Chronic sleep deprivation can cause high blood pressure, diabetes, heart attack, heart failure or stroke. It increases the risk for obesity, depression, confusion, memory impairment, reduced immune system function, lower sex drive, and even psychotic episodes. Because sleep is vital the daily processes of DNA repair, lack of sleep leads to increased risk of cancer. Lack of sleep is a serious medical issue that can be ruinous.
So we should be concerned about the epidemic of sleep deprivation affecting individuals with severe autism and their families. It’s estimated that sleep disturbance affects 40-80% of children with autism. Desperate families seek all sorts of interventions, from behavioral “sleep hygiene” practices, to special beds, to supplements like melatonin, to pharmaceuticals like trazodone. But in many cases, nothing seems to regulate the haywire circadian rhythm of the child or adult with autism.
This month we shine a light on the autism insomnia crisis by sharing the lack-of-sleep stories of five autism families. I certainly can relate to all of them. While my 16 year-old ASD daughter has always been a pretty good sleeper, my 23 year-old ASD son, from the day he was born, was highly dysregulated and just could not sleep through the night. I would often awake to crashing sounds at 2am, finding him throwing furniture or whatnot around or outside the house, or to the sounds of water flowing in various sinks, or to the shaking of an energized jumping. I would often (barely) function on 3 or 4 hours of sleep a night and then spend several hours cleaning up whatever mess was made overnight. It was a torment for all of us.
For my son, though I was very reluctant to use medications initially, the drug trazodone, which we started with him a few years ago, helped immensely. Combined with other treatments he has, more or less, been able to sleep most nights. It’s a … dream come true.
But others are not so fortunate. Please look out for our NCSA blog this month and we un-celebrate sleeplessness in severe autism.
Jill Escher is president of National Council on Severe Autism.