Human Rights and High Quality Care for all people with

By Laura Dattaro, Spectrum News, December 6, 2021

The term ‘profound autism’ should be used to describe autistic people who require round-the-clock, lifelong care, a team of autism researchers, clinicians, autistic adults and parents of autistic people announced today.

The guidance is part of a set of suggestions for the field to improve autistic people’s medical care and clinical research on the condition. Other recommendations include a shift toward personalized medicine; adapting services for low- and middle-income countries; and prioritizing funding for research projects that can immediately enhance the lives of autistic people.

The team decided to focus on improvements that could be implemented in the next five years rather than longer-term goals, says Catherine Lord, distinguished professor of psychiatry and education at the University of California, Los Angeles, who co-led the group, which was convened by the editors of The Lancet. That meant turning away from basic science research, such as identifying biomarkers or developing treatments that are gene-specific.

“The question is not, ‘Should we stop doing that?’ — which absolutely we should not stop doing that,” Lord says. “It’s, ‘What do we do in the meantime?’”

The Lancet commission on autism also decided to make recommendations that could be adapted in any country, regardless of resource level, members of the commission say.

The group of 32 representatives from 10 countries first met at the 2019 International Society for Autism Research annual meeting in Montreal, Canada, followed by gatherings at the University of California, Los Angeles, in late 2019 and at the journal’s London office in February 2020, just before the start of the pandemic.

he report formally introduces the term ‘profound autism’ to refer to autistic people with severe intellectual disability, limited communication abilities or both. The term should not be used for children younger than about 8 years old, and it may be more appropriate for adolescents and adults, the report notes.“The main purpose was to call attention to the fact that these kids and adults exist, and that they do need different services,” Lord says. “And that we can predict who they will be, not at age 2 but by age 8 or 9, and we need to plan for them.”

The term is a welcome introduction, says Bölte, who has worked to define autism functioning categories for the World Health Organization’s International Classification of Functioning, Disability and Health. It should also help researchers clarify who is participating in their studies, he says.

“Autism is a huge spectrum, and you can have people with very, very high clinical demands and services,” Bölte says. “They need very comprehensive clinical attention.”

By Amy S. F. Lutz, Psychology Today, December 7, 2021

Yesterday, the Lancet Commission on the future of care and clinical research on autism — a group of 32 researchers, clinicians, family members, and self-advocates from around the world — released a comprehensive 64-page report detailing changes that should be made over the next five years to improve the quality of life of autistic people and their families.

Besides a common-sense call for individualized, incrementalized, evidence-based interventions, one of the Commission’s key recommendations is to carve out the most impaired section of the spectrum and give it its own label of “profound autism,” which would include autistic individuals who also have significant intellectual disability (IQ below 50), minimal or no language, and who require round-the-clock supervision and assistance with activities of daily living. The Commission expresses “hope that [the introduction of “profound autism”] will spur both the clinical and research global communities to prioritise the needs of this vulnerable and underserved group of autistic individuals.”

This move represents just the most recent example of a growing dissatisfaction with the monolithic diagnosis of Autism Spectrum Disorder that was introduced in DSM-5 eight years ago in place of more narrowly defined categories such as Asperger Syndrome, Autistic Disorder, and Pervasive Developmental Disability, Not Otherwise Specified (PDD-NOS). Last month, the National Council on Severe Autism (NCSA) — on whose board I serve — issued a position statement calling for a “distinct, stand-alone diagnostic category” for the most impaired, and the use of “autisms” rather than “autism” to emphasize the extraordinarily diverse presentations of the disorder has been popular for several years at the most prominent autism conferences, such as the International Society for Autism Research (INSAR).

Deborah Nason, CNBC Personal Finance, December 6, 2021

For parents who have a child with special needs, planning for their loved one’s life after they themselves are gone can be overwhelming. Breaking the process down into manageable parts and working with specialized professionals and companies can help.

“The three main structures a family should put in place to provide future protection for their child relate to money management, self-care and housing,” said certified financial planner Michael Beloff, partner and Chartered Special Needs Consultant with Belvedere Wealth Partners in Stamford, Connecticut.

Money management: If the child receives government benefits, such as Supplemental Security Income or Medicaid, parents will usually establish a so-called special needs trust that will shield assets to allow the child continued access to those benefits. The trustee is the person who oversees the funds and other trust provisions not under the child’s control, Beloff said.

Life insurance is essential, said CFP Colin Meeks, founder of Maryland Financial Advocates in Baltimore.

“It’s the cheapest way to fund a trust,” he said. “Because you need to know what’s left over [from your estate] in order to care for the child, it creates that certain bucket of money.”

Self-care: Parents must arrange the services their child will need to live independently or semi-independently (e.g., household management, medication management, doctor visits, personal care, etc.).

These supports may be overseen by a court-appointed conservator (or guardian, depending on the state) who makes all decisions regarding an individual’s financial and/or personal affairs, or by a person with power of attorney, who can make decisions, as well as the individual, Beloff said.

Parents are encouraged to write a “letter of intent,” a common planning tool that serves as a guide for those who will care for the child in the future. It should cover family history, medical care, benefits, daily routines, diet, behavior management, residential arrangements, education, social life, career, religion and end-of-life decisions.

Reminder:

By Clark Kauffman, Iowa Capitol Dispatch, December 8, 2021

The U.S. Department of Justice announced Wednesday that Iowa is “heavily biased” toward institutionalizing people with intellectual disabilities.

The findings are the result of a long-running investigation into the state-run Glenwood and Woodward resource centers for people with intellectual and developmental disabilities. The investigation centered on the issue of whether residents of facilities are subjected to unnecessary institutionalization in violation of the Americans with Disabilities Act.

The Glenwood and Woodward facilities are run by the Iowa Department of Human Services, which said Wednesday that it is “not surprised by anything” in the Justice Department’s report and remains proud of the work that has been done in an effort to address the issues cited by federal investigators.

In its report, the Justice Department said there is “reasonable cause” to believe Iowa fails to provide services to residents of the two centers in the most community-integrated settings that are appropriate to their needs.

Iowa’s system of care for people with intellectual and developmental disabilities is “heavily biased toward institutionalization,” the Justice Department stated in its report. Critical services and support that would allow residents to live in their own homes and communities — such as behavioral, crisis and physical health supports — are often unavailable outside the centers.

Iowa also fails to provide residents and their guardians with sufficient information about community options that do exist, the Justice Department said. As a result, many resource center residents who could receive desired services in the community are needlessly segregated in institutions.

By Martha Stoddard, Omaha World-Herald, December 3, 2021

Nebraska's workforce crunch has stymied efforts to shrink the list of people waiting for developmental disability services, a panel of state lawmakers was told Friday.

The state budget included enough money to add long-awaited services for 500 people this fiscal year. But five months into the fiscal year, none have been able to start services because providers don't have enough staff, according to Alana Schriver, executive director of the Nebraska Association of Service Providers.

"In fact, many providers are being forced to send notices to people already in service that their needs can no longer be safely met, let alone serve new referrals," she said. "We are in a worse position today than at this same time last year."

To hang on and compete for workers, Schriver said providers need a 30% boost in payment rates from the state. The increase, which would cost an estimated $43 million, would be similar to the pay raises recently approved for front-line employees at the Beatrice State Developmental Center, a state-run institution for people with developmental disabilities.

Schriver spoke at a Health and Human Services Committee interim study hearing about the state's developmental disability services waiting list.

Lawmakers also heard from Tony Green, director of the Developmental Disabilities Division of the Nebraska Department of Health and Human Services. He reported that there were 2,866 people on the waiting list as of Nov. 1. They are seeking a wide range of services, including job coaches, group homes, respite, transportation, independent living support and adult day care. Some people are receiving some services but are on the waiting list to get additional ones.

Many have spent years on the waiting list. Green said the current budget should allow the state to offer services to people who applied as of June 1, 2015.

But Schriver said a survey of providers showed that they are 30% short of the staff needed to provide essential services for current clients, forcing them to make heavy use of overtime and to operate with minimal staff. In at least one case, she said, the agency director has been covering overnight shifts at group homes.

By Danielle Brown, McKnight's Long-term Care News, December 6, 2021

Providers in New York and Minnesota are receiving additional help from National Guard forces to aid with severe staffing shortages amid worries about the omicron variant.

NY Gov. Kathy Hochul (D) last week announced her state was ready to deploy National Guard members to help short-staffed nursing homes. On Thursday, she released additional details about the plans and said that National Guard medical teams will be supporting identified facilities where additional help and resources are needed.

One of those facilities is the 589-bed A. Holly Patterson Extended Care facility in Uniondale, Newsday reported this weekend. Ten Guard members are being sent to the five-star facility early this week, and some 120 medical Guard members will be available statewide, typically in teams of two.

In Minnesota, National Guard members have begun practicing bedside care on mannequins and each other as they prepare to be deployed into nursing homes.

The weeklong training is being given to about 300 troops since most don’t have any prior training in nursing care.

That lack of experience had been a criticism of long-term care providers in New York and elsewhere who received Guard support during previous COVID waves.

Nursing homes lost about 221,000 jobs between March 2020 and October 2021. Hiring has also failed to recover. Federal data showed that nursing homes lost another 8,400 jobs in October.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

VOR OPPOSES:

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

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