by Eric Garcia
“whose earning or productive capacity is impaired”: “From the New Deal to the Real Deal: Joining the Industries of the Future,” 2018, Washington, DC: National Council on Disability, https://ncd.gov/sites/default/files/Documents/NCD_Deal_Report_508.pdf.
processed pieces of foam: Maxfield Sparrow, interview with the author, 2019.
championed by Republican legislators: Deborah Cohen, “Texas Took Great First Step in Ending Subminimum Wage,” Amarillo Globe-News, June 28, 2019, https://www.amarillo.com/news/20190628/cohen-texas-took-great-first-step-in-ending-subminimum-wage.
nonprofit organizations that employ disabled workers: Christine Pulfrey, “Texas Offers Disabled Workers Minimum Wage on State Contracts,” Bloomberg Tax, June 11, 2019, https://news.bloombergtax.com/payroll/texas-offers-disabled-workers-minimum-wage-on-state-contracts.
while he supported the authority: Senator Maggie Hassan, “Senator Hassan Presses Labor Nominee Acosta on Workplace Safety & Worker Protections,” YouTube Video, March 22, 2017, https://www.youtube.com/watch?v=5G2S8EXlzNY.
“The idea that everyone with autism can achieve”: “Vocational Options,” National Council on Severe Autism, December 10, 2018, https://www.ncsautism.org/vocational-options.
“the disabled who have no voice”: “NCSA Letter to Biden Campaign Re Disability Policy,” National Council on Severe Autism, June 4, 2020, https://www.ncsautism.org/blog//ncsa-letter-to-biden-campaign-re-disability-policy.
“Voice of the Retarded”: “Giving a Voice to Families and Guardians: A Survey of Families and Guardians of Individuals with Intellectual and Developmental Disabilities in Various Residential Settings,” VOR, April 2015, https://www.vor.net/images/stories/pdf/VOR_Survey_Giving_a_Voice_to_Families_and_Guardians_April_2015.pdf.
“specialized wages”: “The Movement to Eliminate Work Centers and 14(c) Wage Certificates,” VOR, 2019, https://www.vor.net/images/stories/VOR_VOICE/Spring-2019.pdf.
often lack experience working with disability advocates: Julia Bascom, interview with the author, 2019.
“they’re also the minority opinion”: Julie Christensen, interview with the author, 2020.
in states like Maine that have shuttered their programs: NCSA, “Vocational Options.”
who left sheltered workshops: Janet Phoenix and Tyler Bysshe, “Transitions: A Case Study of the Conversion from Sheltered Workshops to Integrated Employment in Maine,” Milken Institute School of Public Health, George Washington University, July 2015, http://www.vaaccses.org/vendorimages/vaaccses/REPORT_Transitions_ConversionFromShelteredWorkshops_Maine_July2015.pdf.
saw 80 percent of people who worked in sheltered workshops: “Subminimum Wage and Supported Employment,” 2012, National Council on Disability, https://ncd.gov/sites/default/files/NCD_Sub%20Wage_508.pdf.
Vermont has a 38 percent integrated-employment rate: Jean Winsor et al., “State Data: The National Report on Employment Services and Outcomes Through 2016,” Institute for Community Inclusion, University of Massachusetts Boston, 2018, https://www.thinkwork.org/sites/default/files/files/narrative_accessible.pdf.
double the national average of 19 percent: Sarah Katz, “Biden’s Disability Plan Could Close the Equal-Pay Loophole,” Atlantic, August 10, 2020, https://www.theatlantic.com/politics/archive/2020/08/2020-election-subminimum-wage-disabilities/615085/.
“wage-earning is not the primary purpose of these places”: NCSA, “Vocational Options.”
Congress passed the Social Security Disability Amendments Act: Ari Ne’eman, “(Almost) Everything You Need to Know About Sheltered Workshops: Part 2 of 2,” Sometimes a Lion, September 26, 2015, https://arineeman.com/2015/09/26/sheltered-workshops-part-2/.
“It could be”: Julia Bascom, interview with the author, 2020.
the Democratic and Republican Party platforms: Michelle Diament, “Democrats, Republicans Urge End to Subminimum Wage,” Disability Scoop, July 28, 2016, https://www.disabilityscoop.com/2016/07/28/democrats-republicans-subminimum/22548/.
Commission on Civil Rights: “Subminimum Wages: Impacts on the Civil Rights of People with Disabilities,” U.S. Commission on Civil Rights, September 17, 2020, https://www.usccr.gov/pubs/briefing-reports/2020-09-17-Subminimum-Wages.php.
“we now operate a program that gives permission”: Catherine Lhamon, interview with the author, 2020.
“because a lack of belief in people with disabilities”: “Briefing: Subminimum Wages, People with Disabilities—Morning Session,” YouTube Video, YouTube, https://www.youtube.com/watch?v=eXxUMNfH85A&feature=emb_title.
This is something the generations that came up: Julie Christensen, interview with the author, 2020.
“Inclusion measures after they’re through the door”: Marcelle Ciampi, interview with the author, 2019.
“crashing and burning”: John Marble, interview with the author, 2019.
“If we can address all those issues”: Marcelle Ciampi, interview with the author, 2019.
wore a shirt supporting neurodiversity to work: Chris Ereneta, Chris Williams, interview with the author, 2020.
Square has several employee resource groups (ERGs): “ERGs, COVID-19, and Community, Inclusion & Diversity at Square,” Square, 2020, https://squareup.com/us/en/l/diversity/ergs-community.
Ereneta, Williams, and a third colleague: Chris Ereneta, interview with the author, 2020.
“We have a lot of activity around attention differences”: Chris Ereneta, interview with the author, 2020.
Claudia Ng, who considers herself neurodivergent: Claudia Ng, e-mail with the author, 2020.
she long suspected she might have some attention issues: Claudia Ng, interview with the author, 2020.
starting with his time before working in finance: Chris Williams, interview with the author, 2019.
recruit neurodivergent people: Tyneisha Harris, interview with the author, 2020.
Ereneta said he wants to make sure Square: Chris Ereneta, interview with the author, 2020.
Pivot Diversity: John Marble, interview with the author, 2019.
he likens being autistic to being French: John Marble, interview with the author, 2018.
if you put autistic people in a room: John Marble, interview with the author, 2019.
4. “Gimme Shelter”
Julia Bascom has advised presidential candidates: Julia Bascom, interview with the author, 2020.
an autistic person with limited speaking capacity: Silberman, NeuroTribes, 44–46.
continues to live at home and requires 24/7 support: Reporting by the author, 2020.
her support person, Colton Callahan: Julia Bascom and Colton Callahan, interview with the author, 2020.
“One is entitled to wonder”: Pitney, The Politics of Autism, 15.
“chronic undifferentiated schizophrenia”: Jessica Wright, “The Missing Generation,” Spectrum, December 9, 2015, https://www.spectrumnews.org/features/deep-dive/the-missing-generation/.
their parents sent them to institutions: Silberman, NeuroTribes, 279.
Bettelheim subjected his children to strikes and whips with a belt: Silberman, NeuroTribes, 206–7.
compared him to a cult leader: Richard Bernstein, “Accusations of Abuse Haunt the Legacy of Dr. Bruno Bettelheim,” New York Times, November 4, 1990, https://www.nytimes.com/1990/11/04/weekinreview/ideas-trends-accusations-of-abuse-haunt-the-legacy-of-dr-bruno-bettelheim.html.
used corporal punishment: Ronald Angres, “Who, Really, Was Bruno Bettelheim?” Commentary, October 1, 1990, https://www.commentarymagazine.com/articles/ronald-angres/who-really-was-bruno-bettelheim/.
the realities of these institutions: Cal Montgomery, interview with the author, 2019.
Montgomery was institutionalized: Cal Montgomery, correspondence with the author, 2020.
“And I cheerfully signed myself in voluntarily”: Cal Montgomery, interview with the author, 2019.
Montgomery spent three short-term stays: Cal Montgomery, correspondence with the author, 2020.
“This second institution
[in Massachusetts]”: Cal Montgomery, interview with the author, 2019.
the belief that autism is fundamentally different: Samantha Crane, e-mail correspondence with the author, 2019.
Joseph Sullivan: Silberman, NeuroTribes, 373–75.
It was likely that they were able to develop the very skills: Silberman, NeuroTribes.
This proved to be a step too far for autism “experts”: Silberman, NeuroTribes, 375.
“the ‘happy ending’ in the original script is simply not realistic”: Silberman, NeuroTribes, 376.
“I felt betrayed politically”: Silberman, NeuroTribes.
“They were in institutions, basically”: Steve Silberman, interview with the author, 2020.
even though Rimland did not institutionalize: Silberman, NeuroTribes, 376.
“zealous advocates for their own”: Bernard Rimland, “Beware the Advozealots: Mindless Good Intentions Injure the Handicapped,” Autism Research Review International 7, no. 4 (1993), https://web.archive.org/web/20190708132949/http://ariconference.com/ari/newsletter/074/page3.pdf.
Leo Rosa seemed to be a generally happy person: Shannon des Roches Rosa, interview with the author, 2020.
support needs as “very middle of the road”: Julia Bascom, interview with the author, 2020.
“Julia was looking for a roommate–slash–support person”: Colton Callahan, interview with the author, 2020.
“I could probably prepare two very simple meals”: Julia Bascom, interview with the author, 2020.
“an individual, a couple or a family”: Arizona Developmental Disabilities Planning Council, “Shared Living,” https://www.nasddds.org/uploads/documents/Shared_Living_Brief.pdf.
found that 5 percent of people with intellectual or developmental disabilities: S. A. Larson et al., “In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2017,” University of Minnesota, 2020, https://Ici-s.Umn.Edu/Files/ACHyYaFjMi/Risp_2017. Minneapolis.
grocery shopping is not something she can do: Julia Bascom and Colton Callahan, interview with the author, 2020.
“And she’s made that connection in her head”: Julia Bascom and Colton Callahan, interview with the author, 2020.
Congress enacted 1915(c) of the Social Security Act: Mary Jean Duckett and Mary R. Guy, “Home- and Community-Based Services Waivers,” Health Financing Review 22, no. 1 (2000): 123–25, https://www.cms.gov/Research-Statistics-Data-and-Systems/Research/HealthCareFinancingReview/Downloads/00Fallpg123.pdf.
the Americans with Disabilities Act “instructed states”: Pitney, The Politics of Autism, 92.
“First, institutional placement of persons”: Olmstead v. L.C., U.S. 853 (1975).
70 percent of spending went to HCBS waivers: Pitney, The Politics of Autism, 92.
“They’re based off of people with intellectual disabilities”: Julia Bascom, interview with the author, 2020.
the noise could cause sensory overload: Cal Montgomery, interview with the author, 2020.
But states also have the capacity to cap HCBS waivers: MaryBeth Musumeci, Priya Chidambaram, and Molly O’Malley Watts, “Key Questions About Medicaid Home- and Community-Based Services Waiver Waiting Lists,” Kaiser Family Foundation, 2019, https://www.kff.org/medicaid/issue-brief/key-questions-about-medicaid-home-and-community-based-services-waiver-waiting-lists/.
a backlog of 3,791 people: Amanda Seitz, “State Hopes to Fix Disability Agency’s Waitlist,” WCPO, June 22, 2017, https://www.wcpo.com/news/insider/medicaid-waiver-wait-grows-for-hamilton-county-developmental-disability-services-agency.
five thousand individuals over a six-year period: Dan McKay, “New Mexico to Redesign Major Disability Program,” Las Cruces Sun-News, July 10, 2019, https://www.lcsun-news.com/story/news/local/new-mexico/2019/07/10/new-mexico-disability-program-gov-lujan-grisham-healthcare-insurance/1693271001/.
707,000 people on waiting lists: Musumeci et al., “Key Questions About Medicaid.”
One study published in Health Services Research in 2019: Michelle LaClair et al., “The Effect of Medicaid Waivers on Ameliorating Racial/Ethnic Disparities Among Children with Autism,” Health Services Research 54, no. 4 (May 27, 2019), https://doi.org/10.1111/1475-6773.13176.
Maryland, North Dakota, Arkansas, Montana: Doug Leslie, correspondence with the author, 2020.
the waivers improved their overall family quality of life: Karen Goldrich Eskow and Jean Ann Summers, “Family Perceptions of the Impacts of a Home- and Community-Based Services Autism Waiver: Making Family Life Possible,” Journal of Applied Research in Intellectual Disabilities 32, no. 1 (August 27, 2018), https://doi.org/10.1111/jar.12518.
found that HCBS waivers: Douglas L. Leslie et al., “The Effects of Medicaid Home- and Community-Based Services Waivers on Unmet Needs Among Children With Autism Spectrum Disorder,” Medical Care 55, no. 1, (January 2017): 57–63), https://doi.org/10.1097/mlr.0000000000000621, 159–71.
for someone in an institution was $188,318: “Preserving Our Freedom Ending Institutionalization of People with Disabilities During and After Disasters,” National Council on Disability, May 24, 2019, https://ncd.gov/sites/default/files/NCD_Preserving_Our_Freedom_508.pdf.
“Even when a person”: Samantha Crane, correspondence with the author, 2019.
Medicaid specifically prohibits paying for room and board: Janet O’Keeffe et al., “Understanding Medicaid Home and Community Services: A Primer 2010 Edition,” U.S. Department of Health and Human Services, 2010, https://aspe.hhs.gov/system/files/pdf/76201/primer10.pdf.
“they often can charge lower room and board fees”: Samantha Crane, correspondence with the author, 2019.
most HCBS coverage is optional: “Medicaid Long-Term Services and Supports: An Overview of Funding Authorities,” Kaiser Family Foundation, September 25, 2013, https://www.kff.org/medicaid/fact-sheet/medicaid-long-term-services-and-supports-an-overview-of-funding-authorities/.
states spent anywhere between 21 to 78 percent of the money: Erica L. Reaves and MaryBeth Musumeci, “Medicaid and Long-Term Services and Supports: A Primer,” Kaiser Family Foundation, December 15, 2015, https://www.kff.org/medicaid/report/medicaid-and-long-term-services-and-supports-a-primer/view/footnotes/#footnote-172646-27.
“Because group homes and institutions serve multiple people at once”: Reaves and Musumeci, “Medicaid and Long-Term Services.”
could use Medicaid dollars to pay for HCBS: Centers for Medicare and Medicaid Services, 2014, “Medicaid Program; State Plan Home- and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Home- and Community-Based Setting Requirements for Community First Choice and Home and Community-Based Services (HCBS) Waivers,” https://www.federalregister.gov/documents/2014/01/16/2014-00487/medicaid-program-state-plan-home-and-community-based-services-5-year-period-for-waivers-provider.
requirements for home- and community-based settings: “Home- and Community-Based Settings Fact Sheet,” Arc, 2016, https://thearc.org/wp-content/uploads/forchapters/2016%20Home%20%26%20Community%20Based%20Settings%20Fact%20Sheet.pdf.
outlined four types of group settings: “Guidance on Settings That Have the Effect of Isolating Individuals Receiving HCBS from the Broader Community,” Centers for Medicare and Medicaid Services, https://www.medicaid.gov/medicaid/hcbs/downloads/settings-that-isolate.pdf.
when the policy was to “protect” them: Deborah S. Metzel and Pamela M. Walker, “The Illusion of Inclusion: Geographies of the Lives of People with Developmental Disabilities in the United States,” Disability Studies Quarterly 21, no. 4 (Fall 2001).
future setting for his own son Mark: Autistic Adults in Bittersweet Farms, ed. Norman S. Giddan and Jane J. Giddan (Binghamton, NY: Haworth Press, 1991), 1.
“Often these farm arrangements are custodial”: Kit Mead, “Stop Isolating Autistic Adults and Calling It ‘Community-Based Housing,’” Thinking Person’s Guide to Autism, August 3, 2016, http://www.thinkingautismguide.com/201
6/08/stop-isolating-autistic-adults-and.html.
“primarily of people with disabilities”: “Guidance on Settings,” Centers for Medicare and Medicaid Services.
did not track abuse claims: Danny Hakim, “State Faults Care for the Disabled,” New York Times, March 22, 2012, https://www.nytimes.com/2012/03/22/nyregion/new-york-state-draft-report-finds-needless-risk-in-care-for-the-disabled.html.
use of restraints: Annie Waldman, “Kids Get Hurt at Residential Schools While States Look On,” ProPublica, December 15, 2015, https://www.propublica.org/article/kids-get-hurt-at-residential-schools-while-states-look-on.
operated and controlled by the same group: “Guidance on Settings,” Centers for Medicare and Medicaid Services.
“They finally get their alleged HCBS”: Julia Bascom, interview with the author, 2020.
National Council on Severe Autism: Amy Lutz, “National Council on Severe Autism (NCSA) Launches,” Psychology Today, January 14, 2019, https://www.psychologytoday.com/gb/blog/inspectrum/201901/national-council-severe-autism-ncsa-launches.
“But others—like Jonah”: Amy S. F. Lutz, “Adults with Disabilities Deserve Right to Choose Where to Live,”Spectrum News, May 2, 2017, https://www.spectrumnews.org/opinion/viewpoint/adults-disabilities-deserve-right-choose-live/.
“launched a strike on intentional communities”: Paul Solataroff, “Luke’s Best Chance: One Man’s Fight for His Autistic Son,” Rolling Stone, July 27, 2016, https://www.rollingstone.com/culture/culture-features/lukes-best-chance-one-mans-fight-for-his-autistic-son-93049/.
a founding member of NCSA: Lutz, “National Council on Severe Autism.”
gave states until 2022: “CMS Announces Extension for States Under Medicaid Home and Community-Based Settings Criteria,” Centers for Medicare and Medicaid Services, May 9, 2017, https://www.cms.gov/newsroom/press-releases/cms-announces-extension-states-under-medicaid-home-and-community-based-settings-criteria.
March 17, 2023: Calder A. Lynch, “Re: Home- and Community-Based Settings Regulation—Implementation Timeline Extension and Revised Frequently Asked Questions,” Centers for Medicare and Medicaid Services, July 14, 2020.