By Jill Escher
As the Biden administration takes the reins in Washington this week, the catastrophe of Covid-19 is understandably at the forefront of policymaking. But Covid is unfortunately not the only game in town — our newly installed leaders should also keep in mind another epic public health emergency, the nationwide deluge of disabling autism spectrum disorder.
To judge by data from our most populous state, California, we have witnessed a 40-fold increase in cases of permanently disabling, developmental-disability-level autism between the mid-1980s and today. In the case of the Golden State, this scorching increase means a climb from 3,000 cases 35 years ago to about 133,000 cases today. In another shocking statistic, the Centers for Disease Control estimates that 5% of all boys in New Jersey now have autism, and overall trends suggest that increases have not plateaued and that soon fully 3% of all U.S. children will be afflicted. While school districts report ever-increasing caseloads, growing cohorts of disabled autistic young adults age out into a fragmented, outdated adult system unequipped to meet the complex needs. Financial models indicate a massive annual private and public economic burden to the tune of a trillion dollars. States, desperate to keep a lid on the high costs associated with autism, are often quick to de-fund critical programs, while offering no roadmap for the future. Meanwhile families grow increasingly panicked.
Never before has it been so urgent to have a federal administration rooted in reality, data, and science. Only upon a fact-based foundation can America address the complicated challenges wrought by this increasingly prevalent brain-based disorder. With that in mind, here are five fundamental areas in which the new administration can move autism policy in a positive direction.
1. Find grounding in a realistic understanding of autism, and not popular fictions
It has become common to romanticize autism as a sort of quirk or neurodiversity, but by definition, autism is a serious mental disorder involving significant impairments in communication, social functioning and repetitive behaviors. Those in the moderate and severe categories — representing about 70% of the autism population — often have strikingly impaired language, compromised cognitive ability, comorbidities such as epilepsy, substantial functional impairments, and in a significant subset, dangerous behaviors, including aggression, self-injury and property destruction. The 30–40% with severe forms of autism typically need continual care, for life, and have limited to no capacity to self-advocate or earn a living.
Of course those who see their autism as a gift or a colorful difference may well be correct with respect to their personal circumstances. But responsible policymaking requires grounding in a realistic assessment of the pervasive cognitive and functional deficiencies of autism that affect the majority.
What’s needed:
Ensure that the moderately and severely affected populations are fully represented by parents or family members in advisory groups such as the Interagency Autism Coordinating Committee (IACC) and National Council on Disability, and in any hearings on topics that affect the autism population. It is crucial to reach beyond entrenched and highly capable disability rights advocates to ensure that those incapable of meaningful self-advocacy are fully represented at all levels.
To promote a realistic understanding of autism in America, a report should be commissioned detailing the population’s functional levels, challenging behaviors, and support needs. It should also include a robust assessment of effectiveness or ineffectiveness of federal programs for autistic adults, the scope of waitlists, gaps and quality deficiencies in services, consequences of program closures (for example, what happens to severely disabled adults who are incapable of transitioning to competitive employment?), and — perhaps most importantly — the nature and scope of adult services that will be needed as the first generation of parents of the autism boom become infirm and die. These are straightforward bipartisan questions which warrant the development of a solid foundation of data.
Form an advisory council to CMS specifically intended to realistically address the extensive deficiencies in services for those disabled by severe (profound) autism.
2. Embrace a pragmatic approach that facilitates a full continuum of care
Within the burgeoning autism population are a vast diversity of needs and preferences. For a fortunate subset, full inclusion in competitive employment and independent living is both desired and achievable. For others, particularly those more severely disabled by autism, non-competitive employment in specialty programs and disability-specific residential supports may be preferred and/or necessary.
Rather than eroding the array of programs, as is the current trend, it is critical not only to retain options for this diverse population, but to expand them. Full inclusion, for example, is a laudable goal but it cannot reasonably be seen as the sole objective in disability policy. Clearly, other factors such as quality of life, personal choice, financial sustainability, desire to be among social peers, access to therapeutic care, structured supports, and personal safety are of the utmost importance to many individuals and families affected by autism. To this end, we need policy that empowers a full continuum of pragmatic and humane person-centered care options.
It is important to note that while disability advocates often conjure abstract fears of “institutions,” 92% of those with intellectual and developmental disabilities receive services in the community (and predominantly from their parents), not in any institution. Meanwhile, tens of thousands are placed for years on waiting lists for “community” services, with no help in sight, and those who on paper have been provided access to community-based services are often turned away due to lack of appropriate staff or staffing ratios, or refusal of community providers to serve those with severe behaviors. Further, for those with severe autism, community-based care, when available, can often mean isolation and confinement in an apartment or group home due to lack of appropriate onsite amenities, staff and outside programs willing to serve them.
What’s needed:
Make Medicaid HCBS waivers work for the severely autistic, not just the more mildly disabled. Waivers should support a full range of settings, including those with disability-specific features and safety amenities, as guided by person-centered choice and needs.
To attract providers into the field, special rates should apply for persons with severe autism whose needs exceed the behavioral and/or medical resources within standard agencies.
HCBS waiver funds should be routinely available for use by parents and guardians to cover the cost of care that was not delivered by service providers.
Retain and enhance non-competitive employment options pursuant to section 14(c) of the Fair Labor Standards Act. Despite many nonsensical assertions that “all people with disabilities can attain competitive employment” this is obviously patently untrue. Most in the severe autism population have little to no hope of achieving integrated, competitive employment as envisioned by disability rights advocates. To provide them with meaningful day activity, purpose and engagement, non-competitive options, where they are not subject to termination or productivity expectations, and where they find community and social, behavioral, and medical support, should not only be preserved, they should be expanded.
Retain Intermediate Care Facilities as a safety net option for the severely disabled whose needs are too intense for community care. Due to the autism explosion, the developmental disability landscape has dramatically shifted toward a much more behaviorally challenging population. With a lack of structured options, many have ended up in jails or locked in hospitals for lack of viable alternatives. ICFs provide a desperately needed safety net for the most vulnerable. In addition, though the Supreme Court ruling is often mischaracterized, Olmstead v. L.C., 527 U.S. 581, 597 (1999), held that while unjustified institutionalization contravened the ADA, “nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings… Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”
Prioritize HUD vouchers for those who are deemed to require an institutional level of care. As institutions and other state-funded options closed, few community housing alternatives have been offered, spurring a growing autism housing crisis. HUD housing choice vouchers can provide a powerful way for these adults to reside in community housing of their choice at a rate they can afford, even with incomes limited to SSI checks.
Form an advisory council to CMS on severe autism and related intellectual and developmental disabilities to ensure that Medicaid funding can be directed toward realistic options for the most severely disabled. Medicaid was never designed to address the everyday support needs of the adult autism population, and particularly not at this population size, and unlike many other HCBS populations, the daily needs of the adult autism population are largely non-medical in nature. CMS reform is also particularly urgent with respect to crisis care, as autistic children and adults experiencing crisis are often placed in involuntary psychiatric holds, locked and drugged in hospitals, or rejected outright from any support due to lack of appropriate options.
3. Ensure our most vulnerable have the benefit of trained professionals and strong oversight
Most who are disabled by autism cannot effectively speak for themselves or protect themselves from abuse or neglect. This has posed tremendous challenges across many facets of society, including schools, community care and law enforcement. Policymaking should recognize the need for many layers of protection for our most vulnerable citizens.
What’s needed:
Among other reasons, deinstitutionalization was popular because it offered substantial cost savings by eliminating skilled, well paid union jobs in facilities in favor of minimum wage jobs by unskilled workers. The result has been, predictably, “the DSP crisis,” or direct support provider crisis. Autism care workers are often tasked with extremely challenging work, with little to no training and very low compensation. This issue deserves recognition and a system-wide response, perhaps with an eye to requiring baseline state credentialing for DSPs, and wages commensurate with the rigors of the job.
Schools need resources to properly address the challenges of severe autism, but the Keeping All Students Safe Act (KASSA) is not the answer. KASSA eliminates even harmless physical contact needed to keep many students safe and de facto relies on law enforcement intervention to respond to students experiencing crisis.
Quality-based instead of arbitrary “settings”-based oversight of community providers. Bizarrely, the Medicaid HCBS rules have emphasized assessment of arbitrary “settings” standards instead of matters of quality, person-centeredness, and appropriateness of services. Ensuring solid, quality services free from abuse and neglect should be the priority, not a black-box labrythine system to determine acceptability of a “setting.”
Covid protections and vaccines should routinely be prioritized to those with severe disabilities and their care providers, including paid or unpaid parent and family providers.
Not all parents or family members have the physical, mental, emotional and financial capacity to provide care for severely autistic adults. Coerced caregiving for challenging adults imperils family members, particularly our seniors, as well as the disabled individuals. HCBS waiver programs should ensure that no family caregiver has the legal obligation to care for anyone with I/DD who poses a risk, or where the caregiver loses capacity to provide appropriate care.
Given the staggering increase in autism, autism training for law enforcement, first responders, social workers, the judiciary, and medical providers is essential and should be the subject of a national mandate.
To ensure the voiceless and cognitively impaired always have a voice, enduring respect for strong guardianship laws is essential. These allow family members and others qualified and authorized to act in the best interests of the individual to protect their personal and legal interests, subject to judicial oversight.
4. Allow flexible injection of new funding sources and public-private partnerships
When discussing the autism crisis, the elephant in the room is the enormous costs for lifespan care. While disability-based SSI is almost always available to adults disabled by moderate or severe autism, $794 per month (sometimes supplemented by a state) is not a livable amount, particularly for individuals whose needs often exceed $10,000 per month. ABLE accounts help to a certain extent but the contribution and savings caps are low compared to the average need, and also presumes individuals have family members with sufficient wealth to make meaningful contributions, which is not the case most of the time. And as we know, Medicaid is experiencing such a shortfall compared to the need that waitlists for services are growing.
A paradigm shift is needed. We should envision a system that unleashes capacity via a large network of sustainable nonprofits mission-driven to support the growing adult autism population.
What’s needed:
As referenced above, cost savings can often be realized and service gaps filled by financially empowering families to provide or arrange for services, without resort to a middle-man agency. Medicaid waiver dollars should see devoted family members as valued partners in care provision.
Programs that receive Medicaid funding should be subject to more flexible approaches to combining funding from families, ABLE accounts, private insurance, and fundraising.
The Department of the Treasury should report on the feasibility of new category of nonprofit entity, Essential Care Nonprofits. ECNs would be a preferred type of nonprofit devoted exclusively to the provision of daily care and housing for our most severely disabled Americans who are incapable of caring for themselves owing to developmental or mental disability. I have summarized the ECN concept at my website jillescher.com.
5. Boost innovation in research on causation and therapeutics
Finally, it needs to be said that despite several decades of heavy federal investment in autism research we still have little understanding of the biological forces driving up rates — not just of autism, but also of related neurodevelopmental pathologies like ADHD. Clearly, vaccines do not cause autism, and the evidence is extremely strong that autism is highly heritable and rooted in mis-wiring of the brain during fetal development.
Similarly, we have also experienced much disappointment with regard to therapeutics. Clinical providers have no more tools at their disposal now than they did two decades ago, even to address even the most terrible symptoms and behaviors associated with autism.
What’s needed:
Despite the strong heritability, classical genetics, as it turns out, explains very little of the risk for autism. I have suggested that instead of a “genetics first” approach that has dominated thinking at the NIH and NIMH in particular, we need a “genetic-toxicology first” approach to investigating autism risk. The heritability of autism, as well as its soaring prevalence, may be in part explained by molecular perturbations in germ cells wrought by potent modern toxicants such as general anesthesia. A shift in approach is needed to fully address this urgent but largely unexplored dimension of risk.
The core impairments of autism are likely rooted in abnormal brain microstructure that are not susceptible to medical or non-medical therapies. However, great strides can be made in terms of addressing co-morbidities, including sleeplessness, anxiety, depression, tics, epilepsy, attention deficit, aggression, and self-injury. Research in these areas should be boosted.
Because many autism families, in desperation to help their children and adults where standard medications have failed, have taken to using cannabis-based medications, a research program devoted to this option should be developed to improve access to safe and effective medicines.
In closing, few issues are as bipartisan as autism — a serious disorder that affects U.S. families of all political stripes and backgrounds. A fact-based and pragmatic approach to funding, services, supports, and research can put autism policy on the right track in 2021.
Jill Escher is President of the National Council on Severe Autism, an autism research philanthropist, and a housing provider for adults with autism and developmental disabilities.
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. This piece was originally published on Medium.com.