NCSA 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

#KickedOut: When Severe Autism Makes You Too Disabled for Disability Programs

Her son was asked to leave nearly every disability activity he tried

(First in a series of commentaries about the disparate treatment of individuals and families affected by severe autism)

By Deborah Lane

I am a mom to a 31-year-old son B who has autism and intellectual disabilities. He has my entire heart and keeps me entertained with his ridiculous sense of humor and repetition of movie lines used for every situation. He has a childlike faith that teaches me every day, especially when he says his blessing over dinner “thank you Jesus for a very bad day and please help me wait for the live-action Little Mermaid.” Or when he doesn’t leave the house without me putting my hand on his head and saying “Jesus over you today”. In all of these joyful moments, he is also my biggest challenge as his behaviors can escalate in an instant and cause injury and destruction.

When he was around 8 years old, we participated in Special Olympics. During our first several years we chose swimming because he was a water bug and loved it; however, soon after, a new instructor was hired and said that my son was not a good fit for Special Olympics any longer as he was not able to “cooperate appropriately”. We continued to participate in open swim time at the high school most weekends, but I no longer loved Special Olympics or believed in their program. 

Several years later, we were encouraged to try the Special Olympics bowling. I was hesitant but at the same time wanted him to be part of some kind of community. We were not able to even finish the first round because he displayed significant behavioral issues. It was noisy, and the environment was too much for him which resulted in rage and him needing to be restrained by one of the other parents. We were not allowed to attend again.  

A few years after this traumatic incident, we took him to a sleepover camp for special needs children. He did well for a couple of years which made us confident in leaving town to enjoy a vacation. On the first night away from home, we received a call from the camp. Our son had attacked his roommate, and we had to pick him up immediately. The funny thing (not actually funny at all), we paid extra for one-to-one support to safeguard against something like this happening.

When he aged out of school at 21, we entered the world of day programs. We chose to leave the first one because the staff was horrifying in their treatment of the individuals. The second option could have worked if they had given him a one-to-one like we repeatedly begged for but never received. Long story short, the director eventually asked us to leave because his behaviors were too intense. I was devastated and not sure how we were going to proceed.  

After a lot of research, contemplation, and prayer, I decided to start my own day program for him. Honestly, It’s a 24/7 bureaucratic nightmare, especially with the lack of staff and funding, and I never know what tomorrow will bring, but at least I know he won’t be kicked out of this one. At least I know I’m doing my best to provide purpose and community for my son and others like him. At least I know I did everything in my power to help my son feel like he belongs.  

Deborah Lane is a mom who lives in Glastonbury, Connecticut. B is the youngest of her five children. Everyone else is grown and flown and busy giving her grandbabies. Needless to say, they bring her joy without measure. She hasn’t been able to work for many years now as B’s needs became too intense. She loves movement of any kind and needs it! She calls out the name of Jesus all day and night as her source to get through every moment.

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