The Home and Community Based Services Access Act of 2021 (HCBS Access Act) has been drafted for the purpose of seeking comments on various aspects of Mediciad-funded care and services. It would provide more funding to HCBS in community settings and eliminate waiting lists for services and much more, but, as always, the devil is in the details. Comments were due on 4/26/2021, but there should be more opportunities to comment as the proposal moves toward becoming legislation in the US House and Senate. My Congresswoman Debbie Dingell, who represents Michigan's 12th Congressional District, is among those sponsoring this legislation. This is the announcement asking for comments and Representative Dingell's Website with more information.
I'm good at finding devils in the details, a useful exercise when it appears you are being offered a bonanza of services and benefits, but in exchange, you are also being restricted from accessing benefits more appropriate for your disabled family member.
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April 26, 2021
From: Jill R. Barker, Ann Arbor, Michigan
Re: Comments on the proposed 2021 Home and Community-Based Services Access Act (HCBSAA)
To: Representative Debbie Dingell, Cannon House Office Building, Room 116
Washington, D.C. 20515-2212
Senate Special Committee on Aging, Dirksen Center Office Building, G 31 Dirksen Center Office Building:
Chairman Bob Casey, Ranking Member Tim Scott, Senator Maggie Hassan,Senator Sherrod Brown
Dear Representative Dingell, Chairman Casey, Ranking Member Scott, Senator Hassan, and Senator Brown, and other members of the Senate Special Committee on Aging:
I am the mother of two adult sons, Danny Barker (age 44) and Ian Barker (age 36), who have profound, life-long intellectual and developmental disabilities (I/DD).
COMMENTS:
The continued availability of good care that is appropriate to my sons’ needs is precarious due to Michigan’s chronically underfunded mental health system and misdirected efforts that assume that full inclusion in “the community” is attainable and desired by all people with disabilities and their families. The failure to acknowledge the limitations of the full inclusion ideology and the reality that my sons will never attain the desired outcomes of independence and self-determination hamper efforts to improve their quality of life and the effectiveness of programs that serve their needs.
Among the national disability organizations that have commented on the proposed HCBSAA bill, I fully endorse the comments from VOR, a Voice of Reason, NCSA, the National Council on Severe Autism, and the analysis from TFC, Together For Choice. These are organizations that represent people like my sons, who have the most severe disabilities and are the most often underrepresented by other disability organizations and by government sponsored national councils and advisory committees. The organizations mentioned above support a full range of residential and service options to meet the diverse needs of people with severe I/DD and severe autism.
The first reason listed for the proposed HCBSAA is incomplete and misleading. “In order to fulfill the purposes of Americans with Disabilities Act to ensure people with disabilities and older adults live in the most integrated setting.”
Workforce Development
I was glad to see that one of the purposes of the proposed legislation is “…to improve direct care work quality and address the decades long workforce barriers for nearly 4,600,000 direct care workers giving support to people with disabilities and aging adults in their homes and communities”. Most direct care workers in both community, institutional, and other congregate settings, have difficult jobs that are undervalued and often unrecognized for their importance. When I came to the end of the proposed bill), I was disheartened by this – “SEC. 7. WORKFORCE DEVELOPMENT…To be supplied” (at least, this is how my version of the bill reads). This is such an important and neglected aspect in providing care to people with disabilities that perhaps it deserves its own piece of legislation. I believe that poor pay, poor working conditions, and lack of status in the workforce could be a leading factor in the collapse of the system of care for people with disabilities, which at times seems imminent.
Purposes of the HCBS Access Act
Justification to require State Medicaid coverage of home and community-based services is based on false and misleading statements. For example, “…decades of research and practice show that everyone, including people with the most severe disabilities, can live in the community with the right services and supports.”
No competent researcher would make such sweeping statements and pretend that they knew what is possible or desirable for all people with disabilities.
I was on the Michigan Developmental Disabilities Council from 2013 to 2016. At one of the early meetings I attended, a representative from Michigan Protection and Advocacy Services [now Disability Rights Michigan] made the statement that “…we now know that all people with developmental disabilities can work in integrated, competitive work settings for at least minimum wage.”
Whoever decided this, did not talk to me and they never met my sons.
Non-existent and poor-quality services that do not appropriately serve people with severe disabilities, as well as unsafe and unaffordable housing for people with disabilities in the community are staggering problems throughout the country. This legislation would likely push states to move people, often against their will, into unsafe and unprepared communities from congregate settings without dealing with the reality of the present crisis in community care. It is highly unlikely that this proposed legislation will solve all these problems even with new infusions of funding, when the policies do not acknowledge the full range of need and the services to provide for those needs.
Individualized Assessment allows determination of services and supports by a State approved health care worker with no discernable way for the person with a disability or a legal representative to challenge this determination.
While promoting the idea of independence and self-determination for the person with a disability, the proposed HCBSAA has no discernable way that the person with a disability, or their legal representative, when appropriate, is allowed to participate in determining the needs of the eligible individual. Nor is there any mention of how determinations made by a state approved health care provider can be challenged or overturned:
The HCBSAA requires an individualized assessment of the person with a disability “to determine a necessary level of services and supports to be provided, consistent with an individual’s functional impairment…” The health care provider must be approved by the state to make the determination of the level of services and support.
To make sure that the state approved health care provider does not go too far astray from the desired outcome of policies set forth in the HCBSAA - that everyone can and should be served and live “in the community” - the proposed bill requires that the assessment be “…conducted with the presumption…that each eligible individual regardless of type or level of disability or service need, can be served in the individual’s own home and community; and…at the option of the individual, that services may be self-directed…”
A “presumption” is a belief that is held until there is evidence to the contrary - that the belief is no longer true or practical to hold on to. An assessment should be a means of gathering evidence so that one does not have to make too many presumptions and that leads to conclusions based on evidence and truth. An Assessment should inform the person with a disability and others involved in determining needs and supports for the individual, but the Assessor should not be the person who makes those determinations alone.
There is also a requirement for a Person-Centered Care Plan, based on the individual assessment. The Plan is constricted again by the determinations of the state approved healthcare provider who does the assessment.
HCBS Services Specified
Many of the services are conditional on the person with a disability conforming to the expectation that they will be integrated into “the community” and will not need much in the way of specialized services or residential care. These include:
Supported employment (employment in integrated, competitive work settings) and integrated day services, leaving out non-competitive specialized work programs for people with more severe disabilities and specialized day programs for people with severe disabilities.
Services that enhance independence, inclusion, and full participation in the broader community, but leaving out specialized services for other purposes.
Non-emergency, non-medical transportation services to facilitate community integration, but leaving out transportation for other purposes.
Necessary medical and nursing services not otherwise covered which are necessary in order for the individual to remain in their home and community, including hospice services, but leaving out services for other purposes, such as medical services to keep an individual alive, safe, and comfortable.
Specification of HCBS Services by a committee
A panel composed of individuals with disabilities in need of Home and Community-Based Services and organizations representing disability groups, local, state, and federal agencies, family organizations, provider organizations, etc. will submit a report to Congress identifying additional services specified as Home and Community-Based Services with the goal of increasing community integration and self-determination for individuals with disabilities receiving such services.
There is a great deal of controversy in the disability community. Unless the members of the panel are carefully selected to agree with each other, I anticipate that this will create the appearance of a hornet’s nest of activity, but not result in anything of value coming out of it. It could impose even more limits on choice. I do not understand why anyone thinks this is a good idea.
I agree with this statement from the National Council on Severe Autism,
“The HCBSAA ‘Advisory Committee’ would place extraordinary veto power in the hands of a few advocates. The proposed Advisory Committee is designed to be made of a majority of self-advocates and allies, with a minority (if any) representation from those who lack the capacity to advocate for themselves, and who must rely on parents/guardians/conservators to represent their interests… A small, unelected and unaccountable committee would be handed broad discretion to determine what qualifies as HCB services across the country, trumping whatever needs and preferences of severely disabled individuals, an idea that is clearly untenable…”
Thank you for your consideration of my comments on behalf of my sons. I look forward to the day when a truly inclusive approach to Medicaid Home and Community-Based Services takes into account the full spectrum of needs for this diverse population.
Jill R. Barker, Ann Arbor, Michigan
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Past Webinars are posted to the NCSA website.
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February 19, 2021
What’s Wrong with Facilitated Communication?
Please access the free video recording here.
Featuring:
Ralf Schlosser, PhD, Professor in Communication Sciences and Disorders, Northeastern University
Howard Shane, PhD, Director, Autism Language Program, Department of Otolaryngology and Communication Enhancement, Boston Children’s Hospital
James Todd, PhD, Professor of Psychology, Eastern Michigan University
Janyce Boynton, former FC practitioner and educator and advocate for evidence-based practices in the field of communication sciences
Thursday, March 25, 2021 https://www.ncsautism.org/policy-summit
NCSA Policy Summit
See event page here. Watch the video recording here.
Thursday, April 29, 2021
10:00-noon, Pacific / 1:00-3:00pm Eastern
Treating Challenging or Dangerous Behaviors, Part 1: Medical Support
See event page here
Featuring:
Carmen Lopez-Arvizu, MD, Child and Adolescent Psychiatrist, Kennedy Krieger Institute
Lee Elizabeth Wachtel, MD, Director, Neurobehavioral Unit, Kennedy Krieger Institute
Robert Hendren, DO, Professor of Psychiatry and Behavioral Science, UCSF
We will reserve ample time for live Q&A
Thursday, May 27, 2021
10:00-noon, Pacific / 1:00-3:00pm Eastern
Treating Challenging or Dangerous Behaviors, Part 2: Insurance Coverage for Treatment for Severe Behaviors at Any Age
See event page here
Featuring:
Lorri Unumb, Chief Executive Officer, The Council of Autism Service Providers
Judith Ursitti, Vice President of Community Affairs, The Council of Autism Service Providers
Arzu Forough, Executive Director, Washington Autism Alliance and Advocacy
Karen Fessel, Executive Director, Mental Health and Autism Insurance Project
We will reserve ample time for live Q&A
Thursday, June 24, 2021
10:00-noon Pacific / 1:00-3:00pm Eastern
Treating Challenging or Dangerous Behaviors, Part 3: Behavioral and Sensory Support
See event page here
Featuring:
Kelly Bermingham, MA, BCBA, People’s Care Behavioral Health
Robing Steinberg-Epstein, MD, Developmental and Behavior Pediatrician, UCI
John Guercio, PhD, BCBA-D, CBIST
Erik Jacobson, Ph.D, Chief Psychologist, Upstate Cerebal Palsy
Steve Perez, MA, BCBA, Chief Clinical Officer, People’s Care Person Centered Behavioral Health
We will reserve ample time for live Q&A
July 2021
Training for Direct Support Personnel
August 2021
Accessing Appropriate School Settings and Transition Programs
September 2021
Autism Family Emergency Preparedness: Introducing the September 26th Project
Thursday, October 28, 2021
10.00am Pacific / 1.00pm Eastern
Realistic Housing Options for Adults with Severe Autism: An Update
Featuring:
Desiree Kameka, Autism Housing Network
November 2021
Coping with Family Trauma
December 2021
The Crisis in Crisis Care
“Michigan is amid a steep increase in weekly cases, which have tripled in a month. The state has the fourth-highest rate of new confirmed or probable cases per 100,000 in the country.
“On Tuesday, the state reported that 12 percent of tests came back positive, up from 10 percent the day before. The state now has the fourth-highest positive rate in the nation.
“Michigan also reported 16 additional COVID-19 deaths, eight of which followed a review of medical records. All of the deaths occurred in March.”...
Where vaccinations are having a dramatic effect:
According to USA Today, “’Safest place in the city': COVID-19 cases in nursing homes drop 89% as residents get vaccinated” by Ken Alltucker and James Fraser, 2/28/21,
“The number of COVID-19 cases and deaths at America's nursing homes has dropped significantly since December as millions of vaccine doses have been shot into the arms of residents and staff.
“The weekly rate of COVID-19 cases at nursing homes plummeted 89% from early December through the second week of February. By comparison, the nationwide case rate dropped 58% and remains higher than figures reported before late October.”
Disability Scoop published an article on 3/10/21, “Intellectual Disability Among Greatest COVID-19 Risk Factors, Study Finds” by Shaun Heasley, citing research showing that people with intellectual disability disabilities are at a much higher risk of dying from COVID than the general population.
“New research suggests that people with intellectual disability are about six times more likely to die if they contract COVID-19, a higher risk than almost anyone else.
“A review of 64 million medical records from individuals seen by 547 health care organizations across the U.S. between January 2019 and November 2020 finds that intellectual disability is the greatest risk factor — other than old age — associated with COVID-19 deaths.”
According to Tennessee Lookout, Tennessee was the first state in the nation to prioritize people with intellectual and developmental disabilities in its initial vaccine distribution phase.
From the article “COVID-19 numbers plummet among disabled with vaccine rollout” by Anita Wahdwani, 3/9/21:
“The numbers of new COVID infections among people with intellectual and developmental disabilities, and staff who care for them, decreased by more than 80 percent from December 2020 to February 2021, according to newly released data from the Department of Intellectual and Developmental Disabilities."...
”The fatality rate among people with intellectual and developmental disabilities in Tennessee was three-and-a-half times as high as other Tennesseans — a rate comparable only to nursing homes. DIDD programs serve a total of about 12,500 people with disabilities. At least 57 have died and 1,503 tested positive for the virus."
Treatments for COVID improve by trial and error, despite a fractured health system and missteps along the way:
USA Today summarized the progress in treating COVID-19 in this article, “Treatment for COVID-19 is better than a year ago, but it still has a long way to go” by Karen Weintraub, 3/14/21.
Dr. David Fajgenbaum is director of the CORONA (COvid19 Registry of Off-label & New Agents) Project, which has been tracking more than 400 drugs given to 270,000 COVID-19 patients. The article lists potential treatments:
"There are four basic categories of potential treatments, according to Fajgenbaum, each of which needs to be given at a different time in the disease course.
"It's important to use different drugs at different stages of the disease, Fajgenbaum and others said. Tamp down the immune system too early and the virus could wreak havoc; fail to stop an immune overreaction and the patient could die."
Read more about the complexities of finding treatments in the middle of a pandemic for patients desperate for life-saving relief.
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Update, March 25, 2021 from The Detroit Free Press
The
COVID-19 case rate is rising in Michigan. There has been a 633% rise in
hospitalizations since March 1 among people ages 30-39 and an 800%
increase among those 40-49 years old....Those 30-49 — who do not have
wide access to COVID-19 vaccines in Michigan — are being admitted to
hospitals at a faster pace than those 80 and older, the hospital
association reported...People in that 30-49 age group also are most
likely to be parents of school-age children, among whom the virus is
spreading like wildfire. Almost two-thirds of Michiganders over the age
of 65 have gotten at least one dose of the vaccine.
“ …From Detroit and Ann Arbor south to the state-line, the freezing rain changed to rain, but not before heavy ice accumulations occurred. Total precipitation amounts ranged from 1.5 to nearly 2.5 inches from Detroit and Ann Arbor south to the Ohio state-line. … In the Detroit Metropolitan area, the ice storm resulted in power outages to over 425,000 homes and businesses; the 3rd largest outage in history, and the worst ever for an ice storm. Several thousand residents were without power for as long as 4 days. In addition to powerlines, falling trees damaged dozens of cars and houses throughout the area. Most were closed, and there were numerous auto accidents.”
Here is how I remember it…
It began last Thursday night [3/13/1997] with hard rain falling into below freezing temperatures at ground level. By morning we had had 1.6 inches of rain with a 1/2 inch coating of ice on every tree limb, pine needle, and blade of grass in Southeastern Michigan. It was the worst ice storm since records have been kept here for more than 100 years.
The roads had icy patches, but the main problem was trees and tree limbs that toppled onto roadways and power lines, confounding morning commuters and cutting power to some 12,000 homes. Needless to say, schools were closed. Later, something like 425,000 homes and businesses would be affected.
Our lights were dim all morning and the microwave did not work right.
Late in the morning, the temperature dropped and a wind started to blow, knocking out more power lines all day. Our power went out completely a little after noon.
At our house, when the electricity goes, so does the heat and running water. We set up camp in the evening by the fireplace and John got our small gas-powered generator out to run the sump pump, refrigerator, and food processor. We had McDonald’s stuff for dinner and I studied for my midterms by oil lamplight.
[The boys, Danny and Ian, needed their food ground to a consistency where they would not choke on it - swallowing problems often accompany severe cerebral palsy - hence the importance of powering up the food processor. And for those of you who do not have a well and septic system for water and sewage, the sump collects clean water that would otherwise flood the basement. The sump pump pumps it outside where it drains off with the rest of the rain water. If the sump pump stops working, the basement floods. The one benefit of this is that we had plenty of water to flush toilets that we hauled up from the basement sump in buckets.]
It was 16 degrees outside Saturday morning and about 40 degrees in the house. I really flubbed my midterm, partly from not studying and partly because I was suffering from borderline hypothermia.
The rest of Saturday was cold and miserable. We had a constant fire and heated water in old camping pots.
We ate McDonald’s stuff again and snuggled and huddled around the fire singing songs. Jennie [who was ten years old] sang songs I have not heard her sing for some time. And of course we compared our lives to that of the Little House on the Prairie family. [Read “The Long Winter” by Laura Ingals Wilder to get the feel for wind and snow drifting through cracks in the house and the long trek to bring wheat into the starving town that had been cut off from its food supply by the relentless winter storms.]
The most exhausting part of the whole ordeal was being cold much of the time. I’m sure the pioneers could eat so much because they burned up so many calories trying to stay warm. And of course there were the chores we had to do to survive - stoking the wood pile, feeding the fire, washing dishes in heated water, lugging up buckets of water from the sump to flush the toilets, and keeping Danny and Ian warm.
[I don’t remember precisely, how we kept Danny and Ian fed, bathed, and warm, other than it was superimposed on the added chores of running a house without electricity. I do remember that they were somewhat excited and stimulated by living in front of the fireplace most of the day and going to bed with blankets and sleeping bags mounded on top of them.]
The temperature Sunday morning was 10 degrees. It really did not get above freezing until Monday, when it went into the 50’s. Jennie's school was still closed Monday, but Danny and Ian’s school was open. Jennie and I hung out at the mall and the library. We had a very good breakfast at Big Boy.
When we came home for short intervals, the smell of woodsmoke was overpowering and the chill disheartening. Just when it seemed that we might have to spend another night without electricity, the lights went on and transformed us back into our civilized selves.
It’s appalling how almost worthless our house is without electric power. And we are so wasteful, but so happy to be among the lighted.
[Unlike the weather event in Texas, Ann Arbor was not totally shut down and many families decamped to motels for the duration. This was not an option for us - imagine a family of five with two big wheelchairs, a dog, and two cats holed up in a motel room for four days. We couldn't imagine it either.]
