Colin Farrell’s Advocacy for His Son with Angelman Syndrome

Spotlight

Staff Writer

-

August 16, 2024

Colin Farrell’s Advocacy for His Son with Angelman Syndrome

In a recent interview, actor Colin Farrell, 48, discussed his son James, who is 20 years old and living with Angelman syndrome. Speaking to People magazine, Farrell expressed concerns about the challenges that individuals with disabilities and their caregivers face as they transition out of support programs. Farrell highlighted the fact that many such programs end when individuals turn 21, leaving them and their families struggling to find adequate resources and support. With James approaching his 21st birthday in September, these issues are particularly pressing for the actor.

Farrell emphasized the need for continued support, noting, “All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.” In response to these gaps in care, Farrell is launching the Colin Farrell Foundation, aimed at providing support to families navigating these challenges.

Legal Steps for Continued Care

To ensure ongoing care for James, Farrell and his ex-wife, Kim Bordenave, who is also James’s mother, filed for co-conservatorship in 2021 when James was 17. This legal arrangement allows them to make critical decisions regarding James’s medical care and overall well-being. While Farrell has the financial means to provide a live-in caregiver for his son, he is advocating for greater opportunities and resources for all families with children who have special needs. Farrell’s dedication to his son is evident as he stated, “I’m proud of [James] every day.”

Understanding Angelman Syndrome

Chalkboard sign being held up with the words Angelman Syndrome written on it. — Shutterstock

Angelman syndrome is a rare neurogenetic disorder, primarily caused by a mutation on chromosome 15. It affects approximately 500,000 people worldwide. Individuals with Angelman syndrome are often characterized by a joyful and excitable demeanor, frequently smiling and laughing. The condition also includes symptoms such as developmental delays, intellectual disabilities, seizures, and challenges with movement and balance. Most people with Angelman syndrome require lifelong care.

Public Reaction to Farrell’s Interview

Farrell’s candid discussion has resonated with many, especially within the community of caregivers and families affected by disabilities. Comments on People’s Instagram post about the interview were filled with gratitude. One person wrote, “My daughter lives with Angelman syndrome and I’m very grateful to Colin and People magazine for raising awareness.” Another shared their experience, saying, “I took in my brother with Down syndrome/autism after our mom passed away in 2016, he’s turning 35 at the end of this month, YES! The world needs to be kind to our adult children with special needs.”

Many caregivers echoed similar sentiments, emphasizing the importance of raising awareness and advocating for better support systems. One parent remarked, “Thank you for all you do for getting information and awareness out there. Our son Jackson is 25 years old and we struggle sometimes for help and assistance! This would be amazing.”

Experts Praise Farrell’s Advocacy

Disability advocates have also applauded Farrell for bringing attention to this critical issue. Amanda Moore, CEO of the Angelman Syndrome Foundation, noted that Farrell’s story resonated deeply within the community, highlighting both the challenges and the resilience of families. She emphasized the importance of parents sharing their stories, stating, “When parents speak out, it not only raises awareness but also creates a sense of community and understanding. It helps other parents and caregivers feel less isolated in their journey.”

Katy Neas, CEO of The Arc, a disability advocacy organization, also praised Farrell’s efforts. She pointed out that despite Farrell’s financial resources, his story underscores the universal challenges faced by families caring for loved ones with disabilities. Neas shared that many families worry about the future, especially as they age, asking, “What happens when I die? Who’s going to take care of my child, my adult child, or my sibling?”

However, Neas also noted that Farrell’s interview serves as a reminder of the deep love and dedication that families have for their members with disabilities. She concluded, “The families that we’re engaged with, they look at their family member who has a disability as someone they love just the way they love everybody else. They are a treasured member of their family, and they’re not some problem that needs to be solved.”

Click here for the original article by Kaitlin Reilly with Yahoo Entertainment.

A Comprehensive Guide to Planning for Your Adult Child with Disabilities

Shahapurkar, Mr. Dayanand (Author)
English (Publication Language)
94 Pages – 10/10/2023 (Publication Date) – Dayanand Shahapurkar (Publisher)

Sale

Special Needs Trusts: Protect Your Child’s Financial Future

Urbatsch Attorney, Kevin (Author)
English (Publication Language)
336 Pages – 10/25/2021 (Publication Date) – NOLO (Publisher)

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Barbie’s Latest Additions: Blind Barbie and Black Barbie with Down Syndrome

Staff Writer

-

July 24, 2024

0

Barbie’s Latest Additions: Blind Barbie and Black Barbie with Down Syndrome

Barbie has unveiled two new additions to its expanding range of diverse and inclusive dolls: a blind Barbie and the first Black Barbie with Down syndrome. These dolls are part of Barbie’s 2024 Fashionistas Line, a collection known for its variety, featuring over 175 different skin tones, eye colors, hair textures, body types, disabilities, and fashion styles. This significant step forward showcases Mattel’s commitment to reflecting the world’s diversity and promoting inclusion.

Celebrating Diversity and Inclusion

In recent years, the Barbie Fashionistas Line has been at the forefront of representing various disabilities and appearances. Past additions to the line have included Barbies and Kens with mobility aids such as wheelchairs and braces, dolls with hearing aids, hair loss, and vitiligo. The introduction of the first Barbie with Down syndrome last year was a milestone, and this year, the lineup expands further with the introduction of a blind Barbie and a Black Barbie with Down syndrome.

According to a statement from Mattel, these new dolls were created in partnership with nonprofit agencies that advocate for those with vision impairments and blindness, as well as people with Down syndrome. The collaboration involved extensive conversations with members of the communities these dolls represent, ensuring that the dolls feature accurate and respectful details. For instance, the number of lines on the Barbies’ palms was meticulously designed to reflect the characteristics of people with Down syndrome.

Blind Barbie: Features and Design

The blind Barbie is designed with an eye gaze facing slightly up and out. Credit: Mattel/USA Today

The blind Barbie is a first for the Fashionistas Line, although Mattel had previously introduced a blind Barbie as part of its Inspiring Women series, which included a doll inspired by Helen Keller. This new blind Barbie comes equipped with a white and red cane featuring a marshmallow tip and a pair of functional sunglasses. The sunglasses are designed to provide additional eye protection, catering to individuals who may be sensitive to light.

Unlike some other models, this Barbie has bendable elbows, allowing her to comfortably use her cane. Her eyes are designed with an “eye gaze facing slightly up and out,” reflecting the appearance of the eyes of some blind or low-vision individuals. These thoughtful design choices help in providing an accurate representation of blind and low-vision individuals.

Mattel worked closely with the American Foundation for the Blind (AFB) on the clothing, design, and packaging for the doll. The sensory-rich outfit for Blind Barbie includes a satiny pink blouse and a ruffled skirt, offering a strong tactile experience. The blouse features a brightly colored, high-contrast hook and loop closure on the back, and the skirt has an elastic waistband, making it easier to change Barbie’s clothes. These high-contrast elements are more easily viewable for people with low vision, enhancing the doll’s accessibility.

Accessible Packaging

The packaging for the blind Barbie was also designed with accessibility in mind. New features, which will now be implemented on all Barbie Fashionistas dolls, include braille spelling out “Barbie” and an easier-to-open design with a pull tab that opens the back of the box. This thoughtful packaging makes it more accessible for children and adults who are blind or have low vision.

Eric Bridges, CEO and President of the American Foundation for the Blind, expressed his pride in collaborating with Barbie on the development of the blind Barbie doll. He emphasized that increasing representation and promoting awareness about the experiences of blind individuals and those with low vision is a shared goal. This collaboration aims to inspire boundless opportunities for everyone, ultimately leading to a world of greater accessibility and inclusion.

Black Barbie with Down Syndrome: Features and Design

This is the second Barbie with Down syndrome. Both were made in collaboration with the National Down Syndrome Society. Credit: Mattel/USA Today

Mattel has also introduced another groundbreaking doll, a Black Barbie with Down syndrome. This is the second Barbie with Down syndrome to be introduced, following the release of the first in April 2023. The new doll was designed in collaboration with the National Down Syndrome Society (NDSS), and this time, Mattel also consulted a focus group of Black individuals from the Down syndrome community to ensure the doll’s features and design accurately reflect their experiences.

The Black Barbie with Down syndrome was sculpted to depict the physical characteristics of people with the condition, including a shorter frame, a longer torso, and low muscle tone. Her palms feature single lines, a common characteristic of people with Down syndrome. Her head was crafted with great attention to detail, featuring a rounder shape, smaller ears, a flat nasal bridge, and eyes that are slightly slanted in an almond shape with white dots in the iris. These physical traits help in creating a realistic representation of individuals with Down syndrome.

The Barbie’s hair and clothing were also designed based on community feedback. Her hair is textured and braided, reflecting a request from the Black Down syndrome community. She wears a blue and yellow dress featuring a pattern associated with the Down syndrome awareness movement. The dress includes three arrows in some of the hearts, symbolizing the third 21st chromosome that individuals with Down syndrome have.

Packaging and Availability

Similar to the blind Barbie, the packaging for the Black Barbie with Down syndrome includes accessible features. The packaging has been designed to be more user-friendly for individuals with disabilities, ensuring that everyone can enjoy and use these dolls without unnecessary barriers.

Both dolls will be available for purchase starting Tuesday at major retailers and online at the Mattel shop, priced at $10.99 each. They will also feature in the YouTube series “Barbie Doll Adventures,” further promoting the brand’s inclusive message and reaching a wider audience.

Barbie Fashionistas Line: A Legacy of Diversity

The Barbie Fashionistas Line was first introduced in 2009 and has since been dedicated to reflecting the diverse world that children see around them. Each year, a new lineup of dolls is released, offering a wide variety of shapes, sizes, skin tones, hair colors and types, eye colors and shapes, fashion styles, disabilities, and more. The 2023 line included several different Barbies and Kens in wheelchairs, Barbies and Kens with vitiligo, the first doll with Down syndrome, and a Ken with a prosthetic leg.

According to Mattel, the Barbie Fashionistas series now offers more than 175 unique looks. The dolls aim to advance Barbie’s continued goal of reflecting a multi-dimensional view of beauty and fashion, enabling more children to see themselves in their dolls and see their world reflected through play.

Commitment to Inclusivity

Barbie’s latest additions, the blind Barbie and Black Barbie with Down syndrome, are significant steps in promoting inclusivity and representation in the toy industry. These dolls not only provide children with toys that look like them but also help in educating society about the diverse experiences and appearances of people around the world. Through thoughtful design, community collaboration, and accessible features, Mattel continues to lead the way in creating products that celebrate and embrace diversity.

Click here to read the original article by Mary Walrath-Holdridge at USA Today.

Like this article? You may also like:

Mattel Introduces New Barbie Dolls with Disabilities

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

From Diagnosis to Advocacy: How Medical Students Are Changing Disability Care

Health

Staff Writer

-

July 22, 2024

0

From Diagnosis to Advocacy: How Medical Students Are Changing Disability Care

During her initial year at Harvard Medical School, MD student Lilly Montesano Scheibe was diagnosed with narcolepsy with cataplexy, a neurological disorder causing extreme daytime drowsiness and sudden muscle weakness. The diagnosing physician advised Montesano Scheibe, a medical student, to research the condition on UpToDate and suggested it might impact her future career adversely.

Feeling isolated and uncertain about her medical future due to the lack of information and support, Montesano Scheibe reached out to a classmate, Kelsey Biddle, who also had narcolepsy. Biddle provided guidance on managing the condition, connecting with the School’s Office of Disability Services, and self-advocacy.

“There should be a community and a system in place at a medical school,” Montesano Scheibe emphasized, highlighting the importance of a support network. She also stressed the need for physicians to connect empathetically with patients with disabilities.

At Harvard Medical School, Montesano Scheibe and Biddle are part of a group of faculty, staff, and students dedicated to enhancing MD training for caring for patients with disabilities and supporting medical students with disabilities, visible or not.

These initiatives aim to increase the number of doctors equipped to provide the best care for what the National Institutes of Health recognizes as the country’s largest minority population.

Training Gaps:

Despite one in four Americans living with a disability, only about half of medical schools offer any form of disability education, and most of that is limited to a single session or separate from the main curriculum. This lack of training contributes to health care disparities, with the CDC noting that a quarter of individuals with disabilities face barriers to accessing health care. A 2021 survey revealed that only 40% of physicians felt confident in treating disabled patients, and just 56% strongly welcomed them into their practice.

Efforts to address these disparities have increased over the past five years. The National Council on Disabilities published a policy brief on health equity in 2022, and in fall 2023, the NIH designated people with disabilities as a health disparities population, unlocking research funds to improve health outcomes.

In 2020, HMS faculty and students formed the Disabilities in Medicine and Dentistry Working Group, leading to a comprehensive curriculum on caring for patients with various disabilities. This curriculum, now in its fifth year, includes education on nonapparent disabilities like chronic illnesses and conditions affecting cognition, mental health, or development.

Enhancing Student Support and Representation:

Increasing the number of clinicians with disabilities is also crucial. Studies show that patients from marginalized communities have better health outcomes when their doctors share aspects of their identities. Yet, only 3.1% of doctors and 4.6% of medical students have disclosed disabilities, highlighting the need for more representation.

Harvard’s Office of Disability Services supports medical and dental students with services like testing accommodations, assistive technology, and help with daily activities. The HMS Student Alliance for Chronic Illness, Health Conditions, and Disabilities (HACHD) connects students with similar experiences and offers advocacy and support.

First-year MD student Kiki Schmalfuss chose HMS partly due to the support from HACHD, reflecting the growing recognition of the importance of disability support in medical education.

Promoting Universal Design and Cultural Change:

Advocates at HMS are also promoting universal design to make environments accessible to all. For example, video lectures are closed-captioned to aid students with auditory, visual, or cognitive disabilities. A wellness room provides a private space for managing disabilities or stress, benefiting all students.

Montesano Scheibe and Biddle acknowledge the ongoing challenges but see these initiatives as steps toward eliminating luck from the equation and implementing strategic plans for advancing medical education through better disability training and support.

“Someday, I can be the doctor diagnosing someone,” said Montesano Scheibe, expressing her aspiration to offer understanding and support to future patients facing similar diagnoses.

Click here to read the original Harvard Medical School article by Bobbie Collins.

Like this article? You may also like:

Juno Pioneers Child Disability Insurance, Offers New Hope for Families

Navigating Mental Health: Resources and Support

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Pioneering Child Disability Insurance, Juno Closes $8.5M Funding Round

Health

Staff Writer

-

July 22, 2024

0

Pioneering Child Disability Insurance, Juno Closes $8.5M Funding Round

Juno, the trailblazing company in the U.S. child disability insurance market, has successfully completed an $8.5 million Series A funding round. Led by Spero Ventures and joined by Floating Point, Newark Ventures, and WVV Capital, this funding round increases Juno’s total capital to $12.5 million.

Juno is breaking new ground in the U.S. by addressing a significant gap in employer-provided benefits through child disability insurance. The company’s insurance provides financial support for parents whose children suffer severe disabilities, a need that traditional employee benefits often overlook.

With the new funds, Juno aims to broaden its customer base and broker network, while enhancing product adaptability to fit the financial constraints of various employers.

Juno’s insurance policy offers up to $1 million in tax-free cash, paid out monthly over ten years, covering children from birth up to age 26. This benefit can supplement lost income, cover costs of specialized caregivers, or address medical expenses not covered by standard health insurance. Furthermore, Juno provides personalized support services to help families manage their child’s condition.

Jordan Epstein, CEO and co-founder of Juno, expressed enthusiasm about the funding news, saying, “For over 50 years, U.S. employers have included disability insurance as a typical benefit, yet parents of severely disabled children have often struggled without adequate support. We are thrilled to collaborate with leading employers and brokers to bridge this gap, offering long-term financial security to working parents. Child disability insurance mitigates parents’ greatest uncovered financial risk, and this investment will allow more companies to provide this vital benefit to their employees.”

With this latest funding, Juno reaffirms its commitment to reshaping employee benefits and providing crucial support for families nationwide.

Click here to read the original article by Fintech Global.

Like this article? You may also like:

Juno Pioneers Child Disability Insurance, Offers New Hope for Families

Navigating Mental Health: Resources and Support

How to Find and Finance Wheelchair Accessible Vans

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Celebrating Disability Pride Month: A Journey of Empowerment and Advocacy

Lifestyle

Staff Writer

-

July 21, 2024

0

Celebrating Disability Pride Month: A Journey of Empowerment and Advocacy

Disability Pride Month, celebrated every July, is a time to honor the history, achievements, and experiences of the disability community. This month is dedicated to fostering an environment of inclusivity, raising awareness about disability rights, and celebrating the unique identities and contributions of individuals with disabilities.

The roots of Disability Pride Month can be traced back to the disability rights movement, which gained significant momentum in the latter half of the 20th century. The Americans with Disabilities Act (ADA), signed into law on July 26, 1990, by President George H.W. Bush, marked a watershed moment in the fight for disability rights. The ADA prohibited discrimination against individuals with disabilities in all areas of public life, including employment, education, transportation, and public accommodations. This year celebrates the ADA’s 34^th anniversary.

Why Disability Pride Matters

Accessibility standards and disabled person sign. — Shutterstock

Affirming Identity and Empowerment

Disability Pride Month serves as a platform for individuals with disabilities to embrace their identities with pride and confidence. It challenges societal stereotypes and misconceptions about disability by showcasing the diverse talents, skills, and achievements of the disability community. This celebration fosters a sense of empowerment, encouraging individuals to take pride in their abilities and contributions.

Promoting Inclusion and Accessibility

Disability Pride Month highlights the importance of creating inclusive environments where people with disabilities can fully participate in all aspects of life. It draws attention to the need for accessible infrastructure, inclusive policies, and equal opportunities. By promoting a culture of accessibility, we can break down barriers and ensure that everyone has the chance to thrive.

Raising Awareness and Advocacy

Disability Pride Month is an opportunity to raise awareness about the challenges faced by individuals with disabilities and to advocate for their rights. It provides a platform to educate the public about disability issues, debunk myths, and challenge stigmas. Through advocacy efforts, we can work towards a more equitable society where the rights and dignity of all individuals are respected.

How to Become a Disability Advocate

A mother and her son with Down syndrome smile and take a selfie while walking through a shopping mall. — Shutterstock

1. Educate Yourself and Others

The first step towards becoming a disability advocate is to educate yourself about disability issues, rights, and etiquette. Read books, watch documentaries, and follow reputable sources that provide insights into the experiences of people with disabilities. Share this knowledge with others to promote understanding and empathy.

2. Support Disability-Led Organizations

Supporting organizations that are led by and for people with disabilities is crucial. These organizations work tirelessly to advocate for disability rights, provide essential services, and promote inclusion. Consider donating, volunteering, or participating in their events and campaigns.

Organizations:

American Association of People with Disabilities (AAPD): (www.aapd.com),
Disability Rights Advocates (DRA): (www.dralegal.org),
Autistic Self Advocacy Network (ASAN): (www.autisticadvocacy.org)

3. Promote Accessibility

Advocating for accessibility in your community is a powerful way to support disability rights. Ensure that public spaces, workplaces, and digital platforms are accessible to individuals with disabilities. Encourage businesses and institutions to adopt inclusive practices and provide reasonable accommodations.

Web Content Accessibility Guidelines (WCAG): A comprehensive set of guidelines for making web content more accessible to people with disabilities. WCAG Overview
ADA National Network: Provides information, guidance, and training on the Americans with Disabilities Act (ADA) to support the mission of the ADA. ADA National Network
Job Accommodation Network (JAN): Offers free, expert, and confidential guidance on workplace accommodations and disability employment issues. JAN
Center for Inclusive Design and Innovation (CIDI): Focuses on promoting inclusive environments and products for people with disabilities. CIDI
W3C Web Accessibility Initiative (WAI): Develops standards and support materials to help understand and implement accessibility. WAI
DisabilityIN: A nonprofit resource for business disability inclusion worldwide. DisabilityIN
PEAT (Partnership on Employment & Accessible Technology): Promotes the employment, retention, and career advancement of people with disabilities through the use of accessible technology. PEAT
Section508.gov: Provides information and resources for understanding and implementing Section 508 accessibility standards. Section508.gov
National Disability Rights Network (NDRN): The nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and the Client Assistance Programs (CAP). NDRN

4. Challenge Ableism

Ableism, or discrimination against people with disabilities, is deeply ingrained in society and often goes unrecognized. It can manifest in various forms, from overt acts of discrimination to more subtle, everyday behaviors and attitudes. Challenging ableism involves recognizing and addressing these harmful actions and beliefs. Here are some examples of ableism and ways to combat them:

Language and Terminology: Using derogatory or insensitive language to describe people with disabilities is a common form of ableism. Terms like “crazy,” “lame,” or “retarded” are offensive and perpetuate negative stereotypes. Instead, use person-first language (e.g., “person with a disability”) or identity-first language (e.g., “disabled person”) based on individual preferences.
Assumptions and Stereotypes: Assuming that people with disabilities are less capable, less intelligent, or in need of pity is a form of ableism. These stereotypes can limit opportunities for disabled individuals in education, employment, and social interactions. Challenge these assumptions by recognizing the diverse abilities and contributions of people with disabilities.
Inaccessibility: Environments that are not accessible to people with disabilities are a clear example of ableism. This includes buildings without ramps or elevators, websites that are not screen reader-friendly, and events that do not provide sign language interpreters. Advocate for and support efforts to make physical and digital spaces accessible to all.
Microaggressions: Subtle, often unintentional comments or actions that marginalize people with disabilities are known as microaggressions. Examples include asking invasive questions about someone’s disability, offering unsolicited help, or expressing surprise at a disabled person’s achievements. Educate yourself on recognizing and avoiding microaggressions.
Institutional Ableism: Systemic policies and practices that disadvantage people with disabilities constitute institutional ableism. This can be seen in workplaces that do not provide reasonable accommodations, schools that segregate students with disabilities, and healthcare systems that fail to address the needs of disabled individuals. Advocate for policy changes that promote inclusion and equity.
Representation: The lack of representation of people with disabilities in media, politics, and other areas contributes to ableism. When individuals with disabilities are portrayed, they are often depicted as objects of pity or inspiration rather than as complex individuals. Support and amplify the work of disabled creators and leaders to ensure diverse and accurate representation.

Challenging ableism requires a conscious effort to recognize and address these behaviors and attitudes. Speak out against discriminatory practices, advocate for inclusive policies, and educate others about the importance of equality and respect for people with disabilities. By actively challenging ableism, we can help create a more just and equitable society for everyone.

Celebrating Disability Pride: Events and Activities

The disability flag, Disability Pride flag — Shutterstock

Disability Pride Parades

Disability Pride Parades are vibrant celebrations that bring together individuals with disabilities, their families, friends, and allies. These parades feature music, performances, and speeches that highlight the achievements and contributions of the disability community. Participating in or supporting these parades is a great way to show solidarity and celebrate disability pride.

Workshops and Panels

Many organizations and institutions host workshops, panels, and webinars during Disability Pride Month. These events cover a wide range of topics, including disability rights, accessibility, employment, and mental health. Attending these events provides an opportunity to learn, connect with others, and engage in meaningful discussions.

Art and Culture

Art and culture play a significant role in celebrating disability pride. Many artists with disabilities use their work to express their experiences and advocate for change. Attend exhibitions, performances, and film screenings that showcase the talents of disabled artists. Supporting disabled creators not only celebrates their contributions but also promotes greater representation in the arts.

Disability Pride Month is a time to celebrate the diversity, resilience, and achievements of the disability community. By understanding its history, recognizing the importance of disability pride, and becoming advocates for disability rights, we can contribute to a more inclusive and equitable society. Let us use this month as an opportunity to educate ourselves, challenge ableism, and amplify the voices of individuals with disabilities. Together, we can create a world where everyone is valued and empowered.

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Investigation Uncovers Rights Violations at Connecticut Mental Health Center

Health

Staff Writer

-

May 29, 2024

0

Investigation Uncovers Rights Violations at Connecticut Mental Health Center

After a thorough three-year investigation, Disability Rights Connecticut (DRCT) released a report on Wednesday accusing a major mental health center and its overseeing department of violating statutory and constitutional rights.

The report zeroes in on the Connecticut Mental Health Center (CMHC), an inpatient psychiatric facility in New Haven, and the state Department of Mental Health and Addiction Services (DMHAS), which manages the center.

By reviewing 14 patient records and over 300 policies and procedures at CMHC and DMHAS, DRCT determined that a substantial overhaul is necessary.

“Significant improvements are needed in CMHC and DMHAS policies, procedures, practices, and staff training concerning protection from harm, including sexual abuse; patient treatment plans; restraint and seclusion; therapeutic approaches for life skills enhancement; discharge planning; and quality assurance data collection,” the report stated.

DMHAS Chief of Staff Christopher McClure responded to the report in a written statement, affirming that CMHC is accredited and patient care is the department’s top priority. He mentioned that DMHAS had collaborated with DRCT during the investigation but expressed concerns about DRCT’s findings and recommendations, suggesting they included subjective criteria and overlooked existing robust systems.

A key focus of the DRCT report is the inadequate reporting system for patient care and abuse.

“CMHC lacks effective mechanisms for reporting, investigating, and tracking crucial areas of patient care, risking patient safety,” the report claimed.

The report cited incidents of sexual misconduct that were either not reported or investigated by DMHAS, including two separate incidents where patients engaged in sexual misconduct in public areas and multiple instances of sexual abuse of a female patient by three different male patients.

The report highlighted CMHC’s failure to investigate four out of five allegations of sexual abuse reviewed by DRCT, which included serious accusations against CMHC staff and abuse from a patient’s family member prior to their admission.

Other findings included CMHC and DMHAS’s failures to ensure patient safety, appropriate use of restraint and seclusion, and adequate treatment and discharge planning, leading to significant harm to patients.

The DRCT report offered several recommendations, such as instituting a more concrete system for reporting and investigating abuse and neglect, improving quality assurance data and treatment plans, and developing procedures to protect patients from excessive restraint and seclusion.

Notably, many findings in DRCT’s report echoed those reported by the US Department of Justice at Connecticut Valley Hospital in 2007, which resulted in a settlement.

In response to the report, Senate Republicans released a statement calling for corrective actions and oversight, with Sen. Heather Somers planning to request a formal investigation.

Click here to view original article by Hudson Kamphausen at ctnewsjunkie.com

How Families Can Report Abuse and Ensure Safety of Loved Ones in Inpatient Medical Facilities

A family visiting an elderly inpatient. — Shutterstock

1. Recognize the Signs of Abuse

Understanding the indicators of abuse is the first step in protecting loved ones. Signs may include:

Unexplained injuries or frequent hospital visits.
Changes in behavior or mood, such as withdrawal or depression.
Poor hygiene or malnutrition.
Reports of inappropriate behavior or discomfort around certain staff members.

2. Report Abuse Immediately

If you suspect abuse, it is crucial to report it immediately. Here are steps to take:

Contact Facility Management: Report concerns to the facility’s management or patient advocate. Most facilities have a grievance process.

Notify State Authorities: Each state has a designated department for reporting abuse. For example, in Connecticut, you can contact the Department of Mental Health and Addiction Services (DMHAS).

Call the Police: In cases of immediate danger or criminal behavior, contact local law enforcement.

Contact Advocacy Groups: Organizations like Disability Rights Connecticut (DRCT) can provide assistance and resources for reporting abuse and advocating for patient rights.

3. Utilize Available Resources

Several resources are available for reporting abuse and seeking help:

National Adult Protective Services Association (NAPSA): NAPSA
National Center on Elder Abuse (NCEA): NCEA
Disability Rights Connecticut: DRCT
Child Welfare Information Gateway: Provides state-specific contact information for reporting child abuse and neglect. Child Welfare Information Gateway
Elder Justice Initiative: Offers resources and state-specific statutes related to elder abuse. Elder Justice Initiative
American Society for the Prevention of Cruelty to Children (SPCC): Provides information on reporting child abuse and a national hotline. American SPCC

4. Ensure Safety While in an Inpatient Facility

Regular Visits: Regular and unannounced visits to the facility can help you monitor the care and environment your loved one is in.

Stay Informed: Keep in close communication with the medical staff. Understand the treatment plan, medications, and daily routines of your loved one.

Build Relationships: Establish a rapport with caregivers and staff. Familiarity can encourage better care and accountability.

Advocate for Your Loved One: Be proactive in attending care meetings and advocating for necessary services and changes.

Review Facility Records: Request access to incident reports, staff credentials, and any complaints filed against the facility.

Use Technology: Install cameras in permitted areas or use video calls to frequently check on your loved one.

5. Understand Legal Rights and Protections

Families should be aware of the legal rights of patients in medical facilities, including:

Right to Safe and Adequate Care: Patients have the right to receive safe, respectful, and quality care.
Right to Be Free from Abuse: Patients are protected from physical, sexual, emotional, and financial abuse.
Right to Advocacy Services: Patients and families have the right to access advocacy services to assist in addressing concerns and ensuring rights are upheld.

For more detailed information on patient rights and protections, visit:

U.S. Department of Health & Human Services (HHS): HHS
Centers for Medicare & Medicaid Services (CMS): CMS

Ensuring the safety and well-being of loved ones in inpatient medical facilities requires vigilance, knowledge, and proactive engagement. Utilize the available resources and stay involved in your loved one’s care to help prevent and address any issues of abuse.

Like this article? You may also like:

Advocacy Group Sues New York State Education Department Over Withheld Abuse Documents

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

This article contains affiliate links. When you make a purchase through our links, we may earn a commission from Amazon and other retailers, at no cost to you.

Paris Paralympics 2024: Elevating Disability Rights and Global Perceptions

Sports

Staff Writer

-

May 23, 2024

0

Paris Paralympics 2024: Elevating Disability Rights and Global Perceptions

The upcoming Paris Paralympics are anticipated to provide a significant boost to the movement, similar to the transformative impact of the 2012 London Games. Organizers are hopeful that the event will elevate the rights of disabled individuals to a global priority.

Andrew Parsons, President of the International Paralympic Committee (IPC), expressed that the Games, starting 100 days after the Olympics on August 28, are expected to reshape global perceptions of people with disabilities. Parsons emphasized the importance of putting disability rights back on the global agenda, highlighting that this issue has been overshadowed by topics like gender identity in recent years.

Parsons noted that the COVID-19 pandemic worsened the situation for individuals with disabilities, as many health systems failed to meet their needs. He stated that the pandemic severely affected individuals with disabilities, revealing shortcomings in healthcare systems worldwide.

The Paris Paralympics symbolize a return to normalcy, with spectators allowed to attend, unlike the largely empty venues of the Tokyo 2020 and Beijing 2022 Games. Parsons believes that the Paris setting, with events near iconic landmarks such as the Eiffel Tower and the Grand Palais, will captivate global audiences.

The IPC expects the television viewership for Paris to exceed the 4.1 billion who watched the Tokyo Paralympics, benefiting from more favorable viewing times for European and American audiences. While acknowledging that London 2012 set a high standard for Paralympic sports, Parsons is confident that the level of competition has significantly improved since then.

Facade of the town hall of Paris, France, decorated for the Olympic and Paralympic Games. Paris is the host city of the 2024 Summer Olympics — Shutterstock – Facade of the town hall of Paris, France, decorated for the Olympic and Paralympic Games 2024.

Parsons highlighted the growing interest in Paralympic sports, noting that events like wheelchair basketball and five-a-side football have become faster and more physical, with more teams competing at a high level.

To boost ticket sales, Paris organizers launched an advertising campaign. So far, 300,000 tickets have been sold to the public, with another 600,000 acquired by public sector organizations and the Olympic and Paralympic committees. Parsons is optimistic about reaching the sales figures achieved in London 2012 and Rio 2016, where millions of tickets were sold in the final weeks before the Games.

Parsons emphasized that the Paralympics are not just about sports but also about changing perceptions. The event aims to inspire and demonstrate that athletes with disabilities can achieve extraordinary feats, ultimately striving to change the world by altering perceptions.

However, the Games are not expected to make the Paris Metro system more accessible to wheelchair users. French law requires that if one station is modified for accessibility, all stations on that line must also be upgraded. To mitigate this, a thousand specially adapted taxis will be available, and public buses will be equipped to accommodate wheelchair users.

Click here to view original article at Fox28 Spokane.

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Excluding Race From Lung Function Testing Could Increase Disability Benefits for Black Veterans

Health

Staff Writer

-

May 22, 2024

0

Excluding Race From Lung Function Testing Could Increase Disability Benefits for Black Veterans

Adjusting lung function assessments to exclude race as a factor—a shift advocated by health equity proponents—would lead to a reclassification of lung disease severity for nearly half a million Black Americans. Consequently, Black veterans might receive over $1 billion in additional disability benefits, according to a study published in the New England Journal of Medicine.

Context and Background:

The use of race in clinical algorithms has sparked extensive debate and controversy. The American Thoracic Society (ATS) is among the many medical organizations addressing this issue. Last year, ATS suggested that racial adjustments in lung disease diagnosis could contribute to health disparities and recommended discontinuing their use, calling for more research on the impacts of such changes.

Study Presentation:

The new study, presented at the ATS annual meeting in San Diego, aims to quantify the effects of removing race from lung function equations. Raj Manrai, the study’s senior author and an assistant professor at Harvard Medical School, hopes the findings will help prepare clinicians and health systems for the potential influx of patients requiring reevaluation.

Anticipated Changes:

Nirav Bhakta, a pulmonologist at the University of California, San Francisco, described the study as a significant effort, providing a clear picture of the expected changes. Bhakta emphasized the need for additional tests and imaging to prevent mortality and suggested that remote, AI-driven spirometry could alleviate the burden on hospital labs.

Implementation at Hospitals:

Boston Medical Center (BMC) recently updated its spirometers to use race-neutral equations, requiring software updates and integration into electronic health records. Michael Ieong, who oversees BMC’s pulmonary function lab, noted that it will take time to assess the impact on patient volume.

Historical Context:

The racial correction in spirometry, adjusting readings by up to 15% for Black patients, has been controversial. Critics argue that it stems from outdated and racist science and is problematic given that race is not a biological category. James Diao, the study’s lead author, highlighted the significant clinical and financial implications of these adjustments.

Implications for Black Veterans:

Rohan Khazanchi, a co-author, urged Black patients previously assessed with race-based equations to seek reevaluation. The study found that using race-neutral equations could substantially increase disability payments for Black veterans, while potentially reducing benefits for white veterans.

Broader Impact:

The study indicates that 12.5 million Americans may experience changes in their lung impairment classification. For instance, an additional 430,000 Black people would be diagnosed with moderate to severe COPD, while 1.1 million fewer white patients would receive such diagnoses.

Financial Implications:

The Veterans Administration could see a 17% increase in disability payments for Black veterans, amounting to an annual redistribution of $1.94 billion among eligible veterans.

The study’s results compel a reevaluation of how eligibility for disability and occupational fitness is determined. The authors acknowledge that while some patients might gain access to new treatments, others could lose eligibility for certain procedures. Overall, the goal is to ensure that clinical decision support tools are evidence-based and serve all patients equitably.

Read the full original article by Usha Lee McFarling at STAT News here.

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

22.5% Disability Employment Rate in 2023

Professional

Staff Writer

-

May 22, 2024

0

22.5% Disability Employment Rate in 2023

Record Employment Rates for Workers with Disabilities

In 2023, 22.5% of individuals with disabilities were employed, marking the highest percentage since data collection began in 2008. This increase is attributed to a robust labor market, more remote work opportunities, and a heightened focus on accessibility from business leaders.

Persistent Disparities in Employment

Despite these gains, significant disparities remain. People with disabilities are three times more likely to be unemployed compared to those without disabilities. The unemployment rates are especially high among Black adults with disabilities and veterans with disabilities, many of whom live near or in poverty. These issues not only harm society but also affect business negatively.

african american man with myasthenia gravis, bold and dark skinned office worker sitting with walking cane and using computer, looking at monitor, graphs and notebook on desk — Shutterstock

Current Status of Employment for Disabled Workers

Research by the Bureau of Labor Statistics highlights that companies employing workers with disabilities experience a 90% increase in retention and a 72% boost in productivity. In a challenging labor market, it’s crucial for businesses to tap into all available talent, including veterans, neurodivergent individuals, and caregivers, who are often overlooked due to biased recruitment processes.

Group of two women working at the office. Mature woman and down syndrome girl working at inclusive teamwork. — Shutterstock

Recognizing the Hidden Workforce

Many businesses underestimate the number of employees with disabilities, typically reporting only 4% to 7%. However, a study by Boston Consulting Group reveals that 25% of the workforce has a health condition or disability that limits significant life activities. To secure their future, companies must create accessible and inclusive workplaces.

Advantages of Supporting Workers with Disabilities

Inequities faced by workers with disabilities exist alongside general workplace dissatisfaction. According to Gartner, addressing the “unsettled” state of employee-employer relationships is a major challenge in 2024. This unrest is driven by mistrust, anxiety over productivity, and concerns about work flexibility. Interestingly, improving conditions for workers with disabilities benefits all employees. During the pandemic, flexible work arrangements led to increased job satisfaction and well-being, revealing new opportunities for workers with disabilities.

Wheelchair disabled person works as a barista in an inclusive coffee shop. — Shutterstock

Long-standing Unemployment Gap

Historically, workers with disabilities face higher unemployment rates due to barriers in finding suitable jobs, necessary accommodations, and discrimination. Many do not disclose their disabilities due to stigma, resulting in inadequate workplace accommodations and a lack of employer awareness about necessary support.

How Employers Can Support Disabled Workers

Employers must ensure inclusive recruitment from diverse talent pools and use unbiased job boards and applicant tracking systems. Providing anonymized processes for requesting accommodations and establishing feedback channels are essential. Research indicates that accommodations often cost little or nothing. These practices help employees with disabilities succeed without requiring disclosure and benefit all employees facing various work challenges.

Technological Empowerment

Technology can significantly enhance the workplace for workers with disabilities. AI chatbots and workforce experience platforms can help employees identify success enablers, manage burnout, and improve inclusion and retention. By supporting workers with disabilities, employers create a more inclusive and productive environment for everyone.

Supporting workers with disabilities involves crafting an ideal work life that ensures access and satisfaction for all employees. By doing so, companies not only help employees with disabilities but also foster a more engaged and productive workforce overall.

Read the full and original Fast Company article by Sarah Bernard here.

Like this article? You may also like:

Subminimum Wage Costs Employees with Disabilities – and Entire Workforce

‘Inclusively’ Works to Diversity Job Recruitment

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.

Teenager with Disability Stuns Audience While Singing National Anthem

Spotlight

Staff Writer

-

May 20, 2024

0

Teenager with Disability Stuns Audience While Singing National Anthem

At a Minor League Baseball game in South Carolina, 13-year-old Sawyer McCarthy moved the audience to tears with his rendition of the national anthem. Sawyer’s performance at the Columbia Fireflies on April 28 went viral, amassing over 5.5 million views on Facebook. His mother, Brianna McCarthy, expressed immense pride as Sawyer’s voice resonated globally, uniting people from various countries.

John Oliver, the promotions manager with the Columbia Fireflies, noted Sawyer’s previous performance of “God Bless America” and their eagerness to have him sing again. Despite never having voice lessons, Sawyer’s natural talent and love for singing bring joy to many.

Sawyer, who has Optic Nerve Hypoplasia, a condition leading to blindness and other challenges, discovered his musical gift at an early age. His ability to harmonize and learn music quickly is attributed to his heightened hearing. Despite his disability, Sawyer shines with a passion for singing, aiming to inspire and bring smiles to others.

Humble and soft-spoken, Sawyer dreams of performing on “America’s Got Talent” despite his nerves about Simon Cowell’s critiques. His mother believes that singing is Sawyer’s unique way of communicating, transcending his difficulties with regular conversation. Wherever he performs, Sawyer’s voice leaves a lasting impact.

Click here to view original article and video at www.wowt.com

Connect with AmeriDisability on Facebook, Twitter and Instagram.

Check out the Resources page. Claim or add your disability-focused business or nonprofit for free.