November 17, 2023

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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VOR Speaks Out on

Section 504 of the Rehabilitation Act of 1973

Discrimination on the Basis of Disability in

Health and Human Services Programs or Activities

The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973.

VOR contends that the policies of HHS, and the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.


VOR's Book List:

In My Brother's Words: The Memoir of Susan Mercogliano

By Chris Mercogliano

In My Brother's Words is the warm and witty autobiography of Susan Mercogliano, a profoundly disabled woman who struggled to grow up in the 1950s. Because Susan could neither speak nor write, her "Irish twin" Chris tells her story for her in her voice, every bit as she would have told it herself.

Susan lived at the Holly Center in Maryland, and was gainfully (and happily) employed at a nearby sheltered workshop for 40 years. Her story embodies the joys and challenges she experienced through the development of America's DD System in the 1960's to the present, having lived in her family home, in a foster home, and finally at one the nation's pre-eminent intermediate care facilities.

Her story encompasses her personal triumphs, family tragedies, and the challenges posed by the politicization and privatization of the DD System. 

Available at:

Thrift Books: Click here 

Bookshop: Click here

Banes & Noble :Click here

Amazon: Click here

This Week's News:

Disability Providers Warn Overtime Pay Rule Could Jeopardize Services

By Michelle Diament, Disbilbity Scoop, November 13, 2023

A federal proposal to extend overtime pay to millions of additional workers could unintentionally lead to further cuts in the availability of services for people with intellectual and developmental disabilities, providers say.

The U.S. Department of Labor issued a proposed rule in September that would require employers to pay most salaried workers earning less than about $55,000 per year overtime pay if they work more than 40 hours in a week. Officials said the rule would affect about 3.6 million workers nationwide.

If approved, the changes would have deep consequences for people with developmental disabilities seeking services to help them live in the community, according to officials at the American Network of Community Options and Resources, or ANCOR, which represents 2,100 disability service providers across the nation.

The rule would lead to more than $1 billion in additional expenses for disability service providers in the first year alone, the group estimated in a report released this month.

At issue is that disability providers are almost entirely reliant on funding from Medicaid. Without changes in Medicaid reimbursement rates, providers are often unable to raise wages for their workers.

“Raising the salary threshold without a plan for commensurate funding will force employers to make even greater cuts to their programs and services, including restructuring their workforces to afford the new costs,” said Barbara Merrill, chief executive officer for ANCOR.

In an ANCOR survey of 700 providers across 45 states, a third said they would need to eliminate positions if the proposed rule is adopted, while 61% said they would convert salaried employees to hourly and almost half indicated that they would restrict overtime.

The concerns come amid an already stressful environment for disability providers who have been struggling to attract enough workers to maintain services. A separate ANCOR survey of providers last year found that 83% were turning away new referrals and 63% had discontinued offerings because of staffing issues.

Read the full article here

While the following article concerns Long-term care for the aging population, it is probably a good indicator of how the U.S. treats is ID and autism populations, especially given that the Administration for Community Living combined both of these very different groups of individuals under same agency, despite the very different needs and treatment protocols of those receiving their services.

Dying Broke: What Long-Term Care Looks Like Around the World

A KFF Health News - New York Times Project

By Jordan Rau, November 14, 2023

Around the world, wealthy countries are struggling to afford long-term care for rapidly aging populations. Most spend more than the United States through government funding or insurance that individuals are legally required to obtain. Some protect individuals from exhausting all their income or wealth paying for long-term care. But as in the United States, middle-class and affluent individuals in many countries can bear a substantial portion of the costs. Here’s how five other countries pay for long-term care.


Long-term care insurance is mandatory for Japanese citizens age 40 and over, while in the United States only a small portion of people voluntarily obtain coverage. Half the funding for Japan’s program comes from tax revenues and half from premiums. Older adults contribute 10% to 30% of the cost of services, depending on their income, and insurance picks up the rest. There is a maximum amount people must spend from their income before the insurance covers the remainder of the cost. Workers can also take up to 93 days of paid leave to help relatives with long-term care needs. Japan assigns a care manager to each person using services; each manager oversees about 40 older adults. In 2020, Japan spent 2% of its gross domestic product on long-term care, 67% more than the United States spent that year.

The Netherlands

The Dutch have included long-term care in their universal health care system since 1968. One public insurance program pays for nursing homes and other institutional settings, and another pays for nursing and personal care at home. Enrollment is mandatory. Dutch taxpayers contribute nearly 10% of their income toward insurance premiums, up to a set amount.Out-of-pocket payments amount to about 7% of the cost of institutional care. General taxes pay for a third program in which municipalities provide financial assistance and social support for older people living at home. There is no private long-term care insurance. The Netherlands spent 4.1% of its gross domestic product on long-term care in 2021, more than any other country tracked by the Organization for Economic Cooperation and Development, and four times the amount the United States spent.


Provinces and territories fund long-term care services through general tax revenue. Money budgeted is not always enough to cover all services, and some localities give priority to those with the greatest needs. The amount of subsidies people can receive, the costs they have to pay out-of-pocket, and the availability of services vary by province and territory, as they do in the United States with state Medicaid programs. The mix of providers also varies regionally: For instance, nursing home care in Quebec is mostly run by a public system while homes in Ontario are mostly for-profit. Notably, Canada’s long-term care system is separate from its national health care system, which pays for hospitals and doctors with no out-of-pocket costs to patients. In 2021, Canada spent 1.8% of its GDP on long-term care, 80% more than the United States spent.

Continued on KFF California HealthLine or via the New York Times

For Caregivers of People Living with Disabilities, Respite Care Provides Room for Rest

A nonprofit in Puerto Rico connects caregivers with qualified respite care providers so they can take care of the last people on their list: themselves.

By Ana Umpierre, Direct Relief, November 13, 2023

Lina Torres, 70, is mom to Manuel, a 29-year-old adult with significant physical and intellectual disabilities. She and her husband diligently care for their only son 24 hours a day, seven days a week. “If I were to die today, even though I’m hoping to reach 100 years, Manuel would die as well.”

Manuel Alberto, as his mom calls him, is entirely dependent on his parents. Unable to walk or speak, “we are his eyes, ears, and hands,” said Torres.

Although Manuel attended school until the age of 28 under the special education program, his parents felt the system did not provide the services he needed. Inclusion, they quickly realized, would never be possible.

To fill those gaps, Lina and her husband took matters into their own hands, seeking advice from the National Association for Child Development, or NACD, an organization that designs individual programs to support parents in helping their children achieve their innate potential.

For the last 17 years, Lina and her husband have been practicing the daily exercises and activities suggested by NACD. While he is still unable to walk, Lina celebrated that these activities have allowed them to ambulate him throughout the house with the help of assistive devices. “He is able to do two or three steps,” said Lina, and for them, that is an achievement on its own.

Doing these exercises requires great physical strength, and as the years go by, it becomes harder. Lina has recently faced numerous health problems, which have forced them to reduce the intensity and frequency of these activities.

She said prioritizing Manuel’s needs has factored into her and her husband putting off their medical appointments. “Our main concern [now] is taking care of ourselves so we can last longer for our son and provide him with quality of life, but we also need quality of life.”

Being a full-time caregiver can take a backbreaking toll on a person’s physical and emotional well-being. These families are often encumbered by onerous medical bills and lack of skilled care for their loved ones, given the often complicated medical issues that require a high level of expertise in handling specialized equipment such as tracheostomy tubes, ventilators, and gastric feeding pumps, among others.

According to the Puerto Rico Ombudsman for People with Disabilities, 22% of the population identifies as living with one or more disabilities. Children who have a disability in Puerto Rico are eligible to receive benefits under the Social Security Disability Insurance, which can help ease the economic burden for the family, even as they transition into adulthood. Additional economic assistance is available for children living in the continental U.S. under the Supplemental Security Income. However, those living in Puerto Rico are ineligible.

Many studies have demonstrated that respite services can improve resilience among caretakers and their families. These services, however, are scarce in Puerto Rico. One of the few organizations addressing this dearth of resources is the nonprofit organization Apoyo a Padres de Niños con Impedimentos, or APNI, which translates to “Support for Parents of Children with Disabilities.” For 46 years, APNI has provided parents like Lina with information, training, orientation, and support services to uphold their children’s rights.

APNI has implemented a respite care program that trains and certifies assistants to provide a much-needed break for the families they serve. Celia Galán, APNI’s executive director, said that it has been challenging to obtain funding to maintain this type of project that is beneficial to these families. Direct Relief awarded APNI a $250,000 grant to expand respite services for families with children with disabilities.

Funding allows APNI to provide up to 30 hours per family for 12 months, and families can distribute them according to their needs. Respite care service assistants support families at home or at the Neonatal Intensive Care Unit.

APNI tries to find respite workers with similar experiences to better assist parents. Parents who have been through the difficult process of having their children in NICU are best able to guide and support other parents going through such stressful circumstances.


Shortage of Caregivers, Shortage of Services:

California Families Who Need Help Paying For 24/7 Home Care Are Stuck On Waitlist

By Emilhy Alpert Reyes, Los Angeles Times, November 1, 223

Nine months after giving birth, Caitlin Martin is still waiting to bring her son home from the hospital.

Her son Connor uses a feeding tube and relies on a tracheostomy and a ventilator to breathe. He was born with a rare birth defect called an omphalocele, which means some of his organs sit in a sac outside his body. Surgeons will eventually fix it, but only after a few years when he has grown bigger.

Martin, who has been coming every day to the neonatal intensive care unit at Children’s Hospital of Orange County to help care for Connor, is eager to bring him home to Anaheim.

But she also fears there will be scant help for her and her husband when that happens, driving them to exhaustion and possibly putting Connor at risk.

Their health insurance will only cover so many hours of nursing care at home — time that could run out within weeks with a child needing ‘round-the-clock care. 

Families like hers can get Medicaid benefits for services that allow medically fragile people to live at home instead of in a hospital, nursing facility or other institution. In California, they can do so by obtaining the Home and Community-Based Alternatives waiver.

But Connor and thousands of other Californians have been languishing on a waitlist. The state stopped accepting applications for the program over the summer, saying it was hitting its annual allotment of 8,974 spots. The cutoff has stranded people who have no realistic way to pay for all the home nursing their families need.

The danger is that “parents are going to decide, ‘We want to bring our child home. We’re going to go home with the limited coverage we have through our commercial plan even though our child needs 24-7 care. We’re just going to not sleep to make sure someone’s awake to care for the child,’” said Anna Leach-Proffer, managing attorney for Disability Rights California. “That puts the child at risk.”

As of September, more than 3,000 state residents were waiting for an HCBA waiver. Some have been stuck in hospitals or nursing facilities, advocates say. Other families have cobbled together enough care at home for their loved ones but can end up dangerously exhausted or financially strained.


Pennsylvania Advocates Ask State Officials to Address Service Crisis for People with Intellectual Disabilities  

By Trish Cornell, Daily Times, November 16, 2023

Families and self-advocates from Delaware and Chester counties worked through travel challenges faced by individuals with intellectual disabilities to meet recently with state officials in Harrisburg.

Both physical and intellectual disabilities made the trip more challenging, but the families overcame obstacles to travel to the state capitol to advocate for more choice and access to services, including day programs, and better pay for direct support professionals.

The group was hosted by state Rep. Leanne Krueger, (D-161) who advocates for individuals with intellectual and developmental disabilities at the state level.

The families met with representatives of the Department of Human Services and Office of Developmental Programs. They told officials that there is a lack of services and staffing that has reached a crisis point across Pennsylvania, which has a devastating impact on families who care for their sons and daughters with intellection and developmental disabilities.

The self-advocates included recent high school graduates who are on waiting lists for appropriate services and senior citizens who need support services to continue to care for their family members 24/7.

“Some families are hanging on by their fingernails. They are devoted to keeping their family members at home and in the community, but they need support. They need meaningful, safe daytime programs in addition to qualified staff,” said Trish Cofiell of Middletown Township, who made the trip with her son, Jake Spencer, 38, who had Down syndrome and suffers from a chronic lung disease.!

The families met as part of The Arc of Chester County’s legislative activities.

They were accompanied on the trip by Jennifer Strausser, chief operations officer of The Arc, and Kim Booz, director of advocacy of the Arc.

Cofiell said many individuals with intellectual disabilities are often not heard or seen when decisions are made about ODP services.


Editor's note: The Arc of PA was instrumental in closing the Polk and Whitehaven Centers. It's ironic that they now say that "individuals with intellectual disabilities are often not heard or seen when decisions are made about their services".

Nonetheless, we do support their efforts to help the families mentiioned above.

Montana - It’s Getting Harder to Find Long-Term Residential Behavioral Health Treatment for Kids

By Aaron Bolton, MTPR, via KFF Health News, November 16, 2023

Connie MacDonald works for the State Department at the U.S. consulate in Jeddah, Saudi Arabia. It’s a dream job, and she loved living abroad with her two sons.

But earlier this year, MacDonald said, her 8-year-old son started to become aggressive. At first the family thought it was ADHD. Her son was indeed eventually diagnosed with attention-deficit/hyperactivity disorder — as well as disruptive mood dysregulation disorder, which makes it difficult for her son to control his emotions, particularly anger.

“He was hurting me. He was threatening to kill his brother. One of the last straws was they had four people at school holding him down for almost an hour trying to calm him down,” she said.

The American International School of Jeddah told her that her son couldn’t come back. His behavior was so severe that MacDonald started to look for residential treatment back in the U.S.

She found Intermountain Residential in Montana. Children in the Intermountain program learn to build healthy relationships through intense behavioral therapy over the course of up to 18 months.

Intermountain Residential is one of the only facilities in the U.S. that serves young children with emotional dysregulation, like her son.

MacDonald remembers crying hysterically when she dropped him off in June, but tears gave way to hope as his violent outbursts decreased over the weeks and months afterward.

“Now when we have our weekly calls, it’s very normal. It’s like talking to your child again. It’s wonderful,” she said.

Intermountain is one of about a dozen programs in the nation that provide long-term behavioral health treatment for kids under 10, according to the National Association of Therapeutic Schools and Programs. It’s one of the only options for kids as young as 4.

Long-term treatment programs like the one Intermountain offers are often a last resort for families.

It can take months before kids with severe mental and behavioral health issues feel safe enough to open up to Intermountain staff, said Meegan Bryce, who manages the residential program. Some kids have been traumatized or abused while adults were supposed to be caring for them, she said. Living through that can leave them deeply scared of or resistant to adult interaction, even once they’re living in a safe environment. Bryce said that Intermountain staff have to gain a patient’s trust before working to figure out the root cause of the child’s behavior. It takes time before they can make an effective long-term treatment plan based on intensive behavioral therapy and building healthy relationships.

Intermountain parents and staff were shocked when the facility announced suddenly this summer that it would close its doors this fall, blaming staffing shortages.

Some parents threatened to sue. A law firm representing them argued in a September letter to Intermountain’s board that it has a contractual responsibility to finish treating children who remain at its residential facility.

Intermountain then reversed course, saying it would downsize in an attempt to keep the program open.

But spokesperson Erin Benedict said it’s no guarantee Intermountain can keep its doors open long-term. Intermountain plans to decrease its capacity from 32 beds to eight.


Tennessee Department of Intellectual and Developmental Disabilities Seeks Funding Boost to Programs

By Anita Wadhwani,Tennessee Lookout, November 13, 2023

The Tennessee Department of Intellectual and Developmental Disabilities is seeking a $72 million budget increase to expand early intervention services for small children and crisis care for adults.

The proposed increase would expand a program that provides emergency intervention for people with disabilities experiencing mental health crises.. Demand for START Assessment and Stabilization Teams continues to increase: last year the crisis teams intervened in 367 instances; this year, the number has grown to 602.

The department is also seeking to fund new beds to stabilize people experiencing mental health crises that would serve as a “much better place for them to stay than a hospital or a jail,” Commissioner Brad Turner said last week.

Judges, police and court officials have been seeking the service expansion, Turner said in making the proposal to widen the reach of the START program —currently operating in five regions — to nine regions. The expansion would reduce the response time in a mental health emergency to under one hour, he said.

The department is also seeking to serve kids who receive nursing home respiratory care. Currently 20 Tennessee children in the custody of the Department of Children’s Services are being housed in out-of-state nursing homes, Turner said. Funding for eight new in-state slots would bring some of those children home. 

The department is also seeking new funding to expand the number of social workers serving children with disabilities or severe medical needs in the Katie Beckett program. Currently social workers in the program are responsible for, on average, 61 children. The goal of a budget boost would be to bring the caseload average below 50.


Keeping Our Family Members Safe:

"Eric Shouldn't Have Died That Day" - Was 'Excited Delirium' to Blame?

By Katie Moore, WWL TV Louisiana, November 16, 2023

The family of a severely autistic teen has settled its wrongful death lawsuit against the Jefferson Parish Sheriff’s Office and the shopping center where the boy died in JPSO custody in 2020 for $1.25 million. 

But the parents of the 16 year old who died, Eric Parsa, pushed for more than just money in the settlement talks. They wanted additional training for JPSO deputies in how to handle people with severe autism. 

While court case is closed, Eric’s death certificate remains a sticking point for the Parsa family as it declares he died primarily of excited delirium, a catch-all term that’s at the center of a national controversy over whether it’s being used to excuse excessive use of force by law enforcement officers.

We had difficulty conceiving. So, when we had Eric, we were just, we were overjoyed that we were pregnant and were going to have him. And he was like our miracle child,” said Donna Lou, Eric’s mother. 

The signs of autism started to surface around the age of two when Eric would repetitively wave his hands in front of his face. 

“He would line up his toys in the water and get upset if they were not in order,” Lou said. 

By his teens, Eric was on the severe end of the autism spectrum with disruptive behavior disorder. Eric would periodically have violent meltdowns, but his parents say he had been making progress controlling them. 

Daren Parsa, Eric’s father, said his son loved arcades. He loved putting on the laser tag vest and running through the maze. He loved earning Skeeball tickets to buy packs of cards to pour the cards out and put them back in over and over again. 

The family would regularly go to the Laser Tag of Metairie on Sunday mornings when fewer people were there, in case Eric had a meltdown. The employees knew the Parsa family and knew Eric had special needs. It was high-fives all around when he entered the building. 

But on January 19, 2020, something triggered Eric to melt down as they were leaving the arcade. Surveillance cameras captured the whole thing. 

“We were so close to getting Eric into that car,” Daren said.

Eric started by slapping his own head, then hitting his father, biting him, attacking him as he tried to get Eric into the car, his safe space, to calm down. 

“Being in a public place, we thought, you know, we had better get some help. And so someone from Laser Tag asked me. Do you need help? Do you want me to call 911 for help,” and Donna said yes. She now second-guesses that answer. 

Help came in the form of JPSO Reserve Deputy Chad Pittfield. He took Eric to the ground, face down, while Daren leaned on Eric to get him to calm down. The video shows Eric bite Pittfield on the leg and Pittfield moves to try and put Eric in a prone position, face-down with his hands cuffed behind his back.

“I was down with him initially when he when they put him in the prone position. And he was calming down,” Lou said through tears, “Stroking his hand, saying, ‘Eric, you're doing a good job, Eric. You're doing a good job calming down’.”

More deputies came crowding around and one relieved Pittfield, leaning on Eric’s backside. They held him prone for a little more than 9 minutes. It turned out, that was too long. He died in the laser tag parking lot surrounded by deputies, paramedics and his parents.

The Jefferson Parish Corner ruled Parsa's death accidental, writing that he died of “excited delirium from an acute psychotic episode” with obesity and prone positioning listed as contributing factors.

“Eric did not have excited delirium. He had a meltdown, outburst that was typical for him when he got upset or frustrated or overwhelmed. You know, that was part of his autism,” Lou said.

In their wrongful death lawsuit against Lopinto, the JPSO and Westgate Shopping Center, the Parsa family attorneys argued Eric's death was not caused by excited delirium, but deputies holding him prone, causing positional asphyxia, meaning, Eric couldn't breathe and his heart stopped.

Jefferson Parish Coroner Gerry Cvitanovich declined to talk about the specifics of the Parsa case. “Out of respect for the family, I'm not going to discuss the particulars of that case,” Cvitanovich said. 

But William Most, one of the Parsa family attorneys, said the death classification and the lack of a formal internal affairs investigation resulting in a report by JPSO into how deputies handled the situation let the deputies off the hook. 

Lopinto said homicide investigators conducted a complete and thorough criminal investigation and whether his deputies followed procedure would be flushed out by attorneys in the civil suit. 

The use of the "excited delirium" cause of death is highly controversial as medical groups and activists are moving away from it, arguing that nationally it's often used to justify excessive use of force by law enforcement.

“One thing we learned is that regardless of how they classified Eric's death, the coroner's office was very clear that if the officers had not acted the way they did, Eric Parsa would most likely still be alive today,” Most said. 

Read the full article here

Law Enforcement Agencies Across the Midlands Gain Autism Awareness, Specialized Training

The program includes techniques such as two-word instructions with gestures and mirroring

By Walker Lawson, WLTX News, Novermber 16, 2023

Richland County Deputies, Lexington Police, and Airport Police have been learning how to better understand the characteristics of autism, and how to apply that knowledge when responding to cases that involve people with autism.

“20% of our folks diagnosed with autism have encountered law enforcement, so that's 1 in 5 of all of our individuals with an autism diagnosis that interact with the police,” said Stephanie Turner, Autism Division Director at the South Carolina Department of Disabilities & Special Needs.

Turner has been teaching evidence-based approaches from a portion of the National Alliance on Mental Illness SC's crisis intervention training (CIT) to deputies across the state to equip them to de-escalate tense situations. 

Experts say some people with autism may not respond the way others do when they encounter law enforcement.

“We need to match their communication level so that they can comply in a dangerous situation," Turner said. 

First, Turner said, there are full-sentence questions that can be complex. Then they move on to steps two and three. 

"Two-word instructions giving them one-step instructions of what to do, you could pair that with a gesture, so if they don't understand what you are saying at least they understand your motion. And the last one would be imitation so mirroring – you do it, they do it right after,” Turner explained.


KPD Launches Program Designed to Improve Safety for those with Developmental or Cognitive Disabilities

The Take Me Home registry is meant to help first responders in cases when individuals with developmental or cognitive disabilities go missing or are found alone.

By Madalyn Torres, WBIR News, November 16, 2023

The Knoxville Police Department announced the launch of its Take Me Home program - a new service designed to improve safety for individuals with developmental or cognitive disabilities.

Take Me Home is a completely free and voluntary registry that will allow parents or guardians to enroll those in their care with cognitive or developmental disabilities. The registry will be managed by the KPD Special Crimes Unit to assist first responders in cases when those individuals are found wandering alone or go missing.

“Police officers routinely respond to situations when individuals with autism or dementia go missing. In those cases, time is of the absolute essence,” KPD Chief of Police Paul Noel said. “The Take Me Home registry will save valuable time and allow pertinent information to be shared with officers in the field and the public much more quickly.”

Any individual with a cognitive or developmental disability who lives, works or goes to school within Knoxville city limits is eligible for the program. Individuals can be submitted to the registry by family members or legal guardians. All submissions for the Take Me Home registry will be reviewed for approval by a member of the KPD Special Crimes Unit.

Information submitted to the registry, which includes emergency contact information, a detailed description of the individual, and an updated photo, is voluntary, confidential and only accessible to first responders and public safety personnel.

“This program offers peace of mind and a safety net for the worst-case scenario,” Noel said. “When an at-risk person goes missing or is found alone, our goal is to resolve that situation quickly and safely. The Take Me Home registry will give our officers an added resource to make that possible.”


Father of Autistic Man Allegedly Killed by Group Home Workers Demands Change in Laws 

By Monica Galarza and Amanda Plasencia, NBC Miami News, November 14, 2023

The father of an autistic man who died after video showed him being wrestled to the ground by employees of a North Miami group home back in 2021 spoke Tuesday to demand changes to help protect people that are developmentally disabled.

Edward Ware, 36, was kill in the Dec. 21, 2021, incident at the Family Tree Concept Inc. group home on Northeast 138th Street in North Miami.

Disturbing surveillance video released by the Miami-Dade State Attorney’s Office showed the moment Ware, who was living with autism, was wrestled to the ground by three group home workers.Investigators say Ware became unresponsive during the course of the incident, stopped breathing, and was rushed to a local hospital where he was pronounced dead.

Ware’s father, Edward Taylor, told NBC6 that he was on the phone with his son at the time of the incident.  “It was devastating. It was upsetting. But, hey, I’ve got to live with it,” Taylor said at the time.

Group home employees Katherine Hair, 34, Terrence Nelson, 24, and Derrick Coley, 21, are facing manslaughter charges in the incident. 

Taylor and his attorneys spoke Tuesday about the wrongful death lawsuit they filed in the case and changes they'd like to see in Florida regarding laws to protect developmentally disabled people.

"I miss my son. I miss everything about him. I just want him back," Taylor said Tuesday. “I’m still hurting I still feel a void."

"These three have been prosecuted, they’ve been arrested and two of them stand trial coming up on December 4th for manslaughter charges. That’s not enough. There has to be regulations for these group homes," attorney Michael Haggard said.

Rad the full article here

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VOR Bill Watch:

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S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.


S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.


S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.

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