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: Too Autistic for Local Programs, but Finding Help, at a Distance

“He needed me for every aspect of his well-being and most importantly, he just needed me to be there.”

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

By Laura

My firstborn went off to college after I had done all I could do to pave the way for her independence and set her up for success. It was the next step. It was normal. It was typical. It was a part of growing up. 

When my son T, who has severe autism, was the same age, I couldn’t imagine sending him off to live somewhere else. I felt he needed my care, he depended on my care, and no one else could possibly care for him the way I did. He needed me to shower him, wash his hair, shave his face, clean his bottom, to ensure he used deodorant and brushed his teeth. He needed me to clean his ears, trim his toenails, and help him dress. He needed me for every aspect of his well-being and most importantly, he just needed me to be there. 

When T turned 21, his Dad and I decided we would look at what type of assisted living opportunities might become available at some point in time. We still weren’t ready but we were curious. We toured a couple of homes in the county, but even if we would have been ready, there was no availability. I decided that I wanted to be able to help him have a successful transition to living away from home and make it as easy as possible for him. I did not want there to be an emergency placement (as is so often what happens) and have him put somewhere with no preparation on his end or for the staff in the home. 

We found out about an amazing development being created in our county with opportunities for a dozen individuals. There was a church, a barn, and homes with an amazing layout. Each individual had their own bedroom, living area and bathroom. I cried when I walked in and saw the space. The residents also shared a large gathering space, dining room and kitchen. 

We worked hard to show that T had made progress with the behavioral issues that the development had an issue with prior. He was more patient and tolerant of others and with support from our case manager, T was given one of the last four spots that were available. We were overjoyed and began our preparation. 

It was a 6-month process from learning that T would attend this amazing place to his actual placement. Social stories were written to help prepare him. We made new symbols for his schedule book, we added pictures of staff to the book, we created countdown calendars and marked the days until T’s new house became a reality! 

When the time arrived, we went to set up his place, we made sure that ALL of his stuff was there because this “stuff” (including 100’s of VHS tapes) mattered. He would know if things were missing and we wanted him to feel 100% at home. 

The philosophy of this particular organization was to not allow parents to visit for several weeks. This made the goodbyes on that moving day even more difficult. After all, in 26 years, T and I had never been apart for more than a week. 

We had supplied the staff with a book about T’s behaviors. When he says this, it means this, calming techniques for when he becomes anxious, what makes him happy, when to give him space etc. It can be like learning a new language in a way, but once you figure him out, and use his schedule book, the system usually runs very smoothly.

Weeks went by and another roommate was added to T’s house. This young man was very verbal and persistent. One night T was upset and missing his family. He was lying on the ground asking for us. No one implemented the plan that we had outlined when T’s anxiety began to rise. T pushed his new roommate down, hit him and then hit a staff member as they tried to intervene. We were called and rushed over. By the time we arrived it was 10 p.m. and he was on the floor crying. We were told he had to leave the next day. 

We knew and understood that his behavior was wrong, but we also believe that had we been able to visit and spend time with the staff and show them how to best interact with T, it could have had a more positive outcome. Now everything we worked for was gone.

T’s school years were ending in just weeks and that meant T would be at home full time. He had nowhere to go and no one to care for him while I worked. No day programs available, at all. We were about to fall off the cliff - together. 

I knew I had to work fast to try and make arrangements, and that was a full-time job in itself. I also knew that any future placement for him was very unlikely after his incident. 

A year passed, and we assembled a new normal without school, found some caregiving support, and had a meeting with Community Mental Health. We said we were willing to look outside of our county to see what options might be available. An option was presented 161 miles away from our home. We felt we had to look, or we might never be presented with future opportunities. 

T’s dad and I drove there believing we would leave and say it was just too far from home and it wouldn’t work for him. Instead, we both somehow felt this was an environment he might do well in. It was a grade school converted into a group home for 24 residents. He would have his own large room and half bath. It was large enough to hold his belongings and still give him some space. It was new and fresh and we felt like it might work.

We drove home thinking about the long drive but knew T’s well being was what ultimately mattered. We chose to move forward. This may not be his forever home as I am also trying to figure out a better solution, but it works for now and that has to be enough. 

Laura was born and raised in Wisconsin but has lived the last 30 years in West Michigan. She is a mother to A and T and wife to Bill. She graduated from the University of Wisconsin Madison and has a successful 35-year sales career selling wine and liquor, pharmaceuticals and currently real estate. She is an advocate for all things T and autism related, fan of her daughter’s photography career and also enjoys quilting and gardening. 

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

#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.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

Welcome to (De Facto) U.S. Policy: "Autism Housing for Rich People Only"

#AuthenticAwareness requires that we see the near-complete absence of realistic policy addressing the housing needs of the rapidly growing number of adults disabled by autism.

(Stock image)

By Jill Escher

Ten years ago, when I started giving presentations about housing options for adults disabled by autism, my characterization of U.S. policy on this most urgent matter boiled down to one phrase, it’s “Autism Housing for Rich People Only.” I said this because adults with autism whose income was limited to Supplemental Security (about $900/month) could not afford rent anywhere in our region, because it was nearly impossible to obtain rental subsidies, sometimes called Section 8, from the local Housing Authorities, and because California was failing to produce more licensed homes even as it shuttered developmental centers.

But in these talks I would express some hope that considering everyone recognized the tidal wave of disabled autistic adults, within a decade we should see a shift toward a more rational and fair system, a system that allows for an array of viable and affordable options for ASD adults incapable of earning a living and caring for themselves.

Now that we’ve time-traveled to this point, I can only say that, instead, things have become worse, much worse, with many factors conspiring to move the autism housing crisis from downright terrible to an absolute nightmare.

Housing costs are soaring, with rents and home prices more than doubling in my area. Concerns about freakishly bizarre Medicaid rules beloved by “disability advocates” stunt desperately needed cost-effective development for people with I/DD receiving HCBS waivers. The federal Department of Housing and Urban Development (HUD), which ostensibly provides needed subsidies, suffers a history of outright discrimination against I/DD-focused developments. Intermediate Care Facilities (ICF) continue to decline in number. The uber-ideological federal Administration for Community Living has turned its back on severe autism, lavishing its attention on the needs of the high functioning sector. Many local resources have diverted to the mentally ill and addicted homeless. And all the while the population of young adults disabled by autism continues to escalate, living with ever-older parents hobbled by ever-more ailments.

The result? An intensifying of our repugnant national policy of Autism Housing for Rich People Only.

So what can we do about it? I think we can make progress toward sensible, equitable housing opportunities for our severely disabled and vulnerable autistic adults, no matter what their family income, via the following:

As a threshold matter, prominent voices in the autism advocacy community must stop mythologizing autism as a mere “difference” to be “celebrated” and instead act like grown-ups and speak truth to power about the dire lifespan needs of this often devastatingly disabled population. Certain organizations sow complacency exactly at a time we should be stoking flames of urgency. Further, we must boost recognition that severe autism should not be lumped in with every other disability category when it comes to housing — these individuals often need indoor space, outdoor space, staff areas, security elements, materials and amenities absent in almost all generic “low-income” housing.

Second, we need HUD programs devoted to prioritizing housing subsidies for the autistic and I/DD, without arbitrary restrictions (such as limiting any new development to a maximum of 25% with I/DD), and without lumping the severely autistic in with every other low-income contingent. Too often new Section 8 vouchers for I/DD are restricted to those exiting institutions, and precious few adults with autism reside in institutions — in California it’s less than .05%. Thousands of HUD vouchers go unclaimed, which is absurd given the desperate need.

As a landlord who over the years has served many tenants with autism and I/DD, including several with severe autism, I can attest to the power of Section 8 vouchers, which cover rental costs over the tenant’s contribution of 1/3 of the tenant’s income (which is usually about $900 in SSI, so the tenant pays only about $300 of the total rent). These tenants are all extremely low-income and able to break through the national policy of Autism Housing for Rich People Only via the wonders of Section 8 subsidies. But they are the lucky ones, as most ostensibly eligible adults with autism in our area don’t stand a chance to obtain vouchers anytime soon.

Third, we must stop the madness about the Centers for Medicare and Medicaid Services (CMS) Home and Community Based Services (HCBS) “Settings Rule,” which has created a culture of fear among those striving to create disability housing. People are reluctant to create new housing opportunities if there is a chance that a state Medicaid agency will withhold services and supports based on arbitrary litmus tests around size and character of the buildings, or the presence of disabilities among the other inhabitants. Disability activists’ zeal for a one-size-fits-all type of setting has effectively resulted in the de-funding of viable and affordable housing options. And of course, we need more HCBS vouchers available to our population, paying rates that attract and retain competent service providers.

While certainly there are other mechanisms to expand housing options, from a more robust approach to Intermediate Care Facilities (ICFs), to more family-oriented solutions such as legacy homes and accessory dwelling units, substantial changes at HUD and CMS federal level could go a long way toward the policy we need: Autism Housing for All Adults Disabled by Autism, Period. I realize this is all easier said than done, but it’s a conversation we must be having at the federal level if we are ever to address this mounting crisis.

Jill Escher is President of the National Council on Severe Autism.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.