Woman With Cerebral Palsy Overwhelmed By Outpouring Of Support
by John Walk, LNP/TNS | November 14, 2023
After returning home from yet another lengthy hospital stay, a 32-year-old with severe cerebral palsy has received over 500 letters of encouragement from across the country.
(Patrick Tehan/San Jose Mercury News/TNS)
LANCASTER, Pa. — Each morning, Strasburg Borough resident Stephanie Mastriania wakes up around 8:30 a.m. She’ll be lifted from her bed, either by her mom or two brothers, to an electric wheelchair and exit her bedroom. Eventually she’ll make her way to a living room that’s undergone a bit of a facelift recently.
Survey Seeks To Understand Family Caregiver Experiences to Better Support Families
The Family and Individual Needs for Disability Supports (FINDS) survey is conducted by the Research and Training Center on Community Living at the University of Minnesota and uses insights of family caregivers to shape better public policy and service delivery systems. Please take and share the survey with your networks so insights will be representative, robust, and impactful!
IDD and Dementia Survey
The National Task Group on Intellectual Disabilities and Dementia Practices (NTG) is looking for input to better understand the needs of family members and caregivers of individuals with intellectual disabilities/Down syndrome and diagnosed or suspected dementia.
Please consider sharing in your community!
Special Education Advocacy
Families and educators living in rural areas of Mississippi are offered free access to a Special Education Advocacy Curriculum
This opportunity is for families and educators living in rural areas in Mississippi to gain free access to an Arc@School Special Education Advocacy Curriculum. CoBank is funding 30 accounts for folks in Mississippi. The curriculum, which normally costs $99 for access, is designed to provide the basic information that families, educators, and non-attorney advocates need to support students and families from birth through age 21 in the special education system. Once the survey is filled out, an account will be made and the login information will be sent directly to you.
When she was photographed in 2018, Korrie Johnson, who has cerebral palsy, had spent 11 months living in a nursing home among residents three times her age because she was unable to find reliable home care. (David Joles/Star Tribune/TNS)
Federal officials are beefing up enforcement of a key U.S. Supreme Court decision that affirmed the rights of people with disabilities to be supported in the community whenever possible.
The Office for Civil Rights at the U.S. Department of Health and Human Services said it is launching a new national initiative to “help drive compliance with the integration mandate and protect the rights of people with disabilities.”
Public Policy Goals for the 118th Congress
2023 — 2024
People with intellectual and developmental disabilities (IDD) want to live, learn, work, pay taxes, and be productive and fully included in their communities. Federal public policy is critical to achieving this vision.
The Arc partners with AAIDD, ANCOR, ASA, ASAN, Easterseals, NACDD, TASH, and UCP to create this public policy agenda. We work together to shape, expand, and protect a strong federal role that provides vital benefits, services, and supports and assures civil rights for our constituency.
Thank you to :
CDI employees
David Tedford Family
Division of Medicaid, Andrew Day and staff
Help @ Home staff
Joni and Friends
Mustard Seed
NAMI Coastal MS
Ocean Springs High School Dance Team
RAM
The Arc of Northwest
169 Individuals were given gifts
Help us celebrate Mississippi's dsp of the year!
Congratulations, Mary!
Think Again encourages Mississippians to toss out their preconceived notions about mental health and think differently. It focuses on the fact that mental health problems are no different than other health problems. It is important for Mississippians to understand how common mental illness is and that there is nothing to be ashamed of for seeking help.
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Mental health is an essential part of our overall health and well-being. We pay attention to our blood pressure, our cholesterol, our heart rates, and our weight. We work to stay as healthy as possible and to change those things we know aren’t healthy. We should put the same focus on our mental health.
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For instance, exercise can directly lift someone’s mood, and sustained exercise has been found to help alleviate long-term depression.
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Spending time with friends, or even a favorite pet, can help many people handle stress. A 30-minute walk in nature or out in the sunlight can help increase energy and elevate your mood.
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Working to live a physically healthy lifestyle can help prevent the onset or worsening of depression, anxiety, and other mental health conditions in addition to the physical benefits.
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People often use alcohol or drugs to ease the symptoms or to cope with undiagnosed mental illness, difficult problems, or to temporarily change their mood. This can make symptoms worse, or even trigger new
Eating healthy foods, managing our stress levels, and getting appropriate amounts of exercise and sleep can go a long way in making us physically and mentally healthy.
Start the Year by Taking the First Step to Making a Financial Plan!
Everyone must plan for how they will pay for the things they want and need in their life, and it’s important to plan before you need it. The beginning of a new year is a perfect time to start!
You don't need a lot of money to plan—but you do need to plan!
The Arc's Center for Future Planning has created free resources to help.
Download our free documents to:
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Explore financial resources and steps to successfully make a plan
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Decide whether a special needs trust or ABLE account is right for you
RJYoung Donation
"We love our community and all that it gives us. To give back, we reinvest resources in our community.
We have a community-centric mindset. When our communities do well, we do well. When we do well, our communities should too. That’s why we proactively seek new opportunities that make an impact on our nearby economy through investments and partnerships with local charities. We’re constantly seeking new ways to increase involvement by partnering with other family-owned and operated businesses and nonprofits that lift up our neighbors and our cities." RJYoung website
A HUGE Thank You!
October 20, 2020/in Advocacy, Featured Posts, From the Frontlines, News, Public Policy/by Pam Katz
The affordable care act:
what's at risk
Census 2020
The End of 2020 Census Data Collection, Next Steps and a Heartfelt Thanks
Written by: Dr. Steven Dillingham, Director
We completed data collection for the 2020 Census on October 15, 2020. Every decennial census makes history, but this was like no other in living memory. Over the coming days, weeks and months, we will provide periodic updates on our post-processing efforts. We are working hard to deliver complete and accurate state population counts as close to the Dec. 31, 2020, statutory deadline as possible.
Our first look at the data collection operation indicates an extremely successful execution. We published our total response rates on a daily basis, and they show that we accounted for 99.9% of all addresses in the nation.
Empower Yourself With Knowledge of the Special Education Process
Are you an advocate, family member, or educator looking to better understand the special education process?
Take the time now to learn more about the special education process and ensure students with disabilities begin 2021 with the services and supports needed to succeed, whether they’re learning at school or at home!
We know that determining and implementing the services a student with disabilities needs can be overwhelming and confusing. The Arc@School’s Advocacy Curriculum provides the basic information to understand special education.
With nearly 10 hours of online, self-paced training, you will learn about:
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Advocacy skills
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The Individuals with Disabilities Education Act (IDEA)
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Early intervention services
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Individualized education programs (IEPs)
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Section 504
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Procedural safeguards
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Educational records
Available for only $99!
Last week, The Arc issued a statement calling for an end to the systemic racism and discrimination against people of color which, unfortunately, still exists in our country. We were heartened to see many chapters issue their own statements or share the statement we released. However, one chapter leader questioned why The Arc, a disability organization, should be speaking out about race. Perhaps you have encountered that question as well. The answer, in short, is that disability rights and racial equity are inextricably intertwined.
These recent events should lead us to reflect on how racism and discrimination play out in the disability community. Consider these examples:
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Labor force participation is lower for Black people with disabilities (17.7%) compared to those who are white (21%)
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Black children with disabilities lose more days of instruction from school suspension (121 days/100 students), compared to white students with disabilities (43 days/100 students)
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25% of Black students with disabilities never graduate high school, compared to 16% of non-Hispanic white students
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The cumulative probability of arrest by age 28 is 55.17 for Black individuals with disabilities, compared to 39.7 for white individuals with disabilities
And these are only a few of the disparities that exist in the disability community. It's time to reflect, as well, on what more we can and should be doing. Standing up in support of people's rights, and against hate and discrimination in its many different forms, is part and parcel of what disability rights is all about. What do you think? Email me at berns@thearc.org.
ADA Celebrates 30 Years
This Sunday, July 26th, we celebrate the 30th anniversary of the American with Disabilities Act (ADA). The Arc is proud of our role in protecting the rights of people with disabilities, including as a significant player in the passage of the ADA. Consistent with our work for decades on policy development and legal efforts on key issues including deinstitutionalization, transforming state service systems, and ensuring that people with I/DD have access to education and life in the community, The Arc was committed to advancing the bill creating a national mandate for the elimination of discrimination on the basis of disability. From educating Congress and the public on the discrimination faced by people with disabilities and their families, helping to organize the grassroots, and supporting Congressional hearings and promotion on the Hill, The Arc was actively engaged in the fight for the ADA. State and local Chapters of the Arc were integral to the movement. Through the tenacious advocacy of The Arc with our allies across the disability community, the bill passed with broad bipartisan support.
The ADA transformed the country in important ways, changing expectations for the lives of people with disabilities. The law requires accessibility and bans discrimination in almost all private businesses, and has significantly reduced discrimination in state and local government services. The transportation and paratransit provisions have yielded greater mobility and community participation. Employment provisions have been important, for example, providing protections in the hiring process and expanding the use of job accommodations for workers with disabilities. The built environment has tangibly changed based on the requirements of the ADA, for example, ramped building entrances and curb cuts on sidewalks are now common. In major ways, people with disabilities are closer to the goals of equality of opportunity, full participation, independent living, and economic self-sufficiency defined in the law.
Thanks to the work of countless committed advocates, we have taken meaningful steps toward the elimination of discrimination against individuals with disabilities. We reflect with pride on the many ways the ADA has achieved its promise. However, even as we honor the powerful progress we have made, there is still much ground to cover. We must end inappropriate and unnecessary institutionalization and ensure sufficient long-term services and supports to accomplish the goal of the integration mandate; address low employment rates for people with disabilities; ensure fair and equal treatment in the voting process; and continue to work to eliminate the architectural, communication, transportation and other barriers and disparities that prevent people with disabilities from sharing in and contributing to the promise of this country.
As we observe the thirty-year landmark of the passage of the ADA, we face a global pandemic. COVID-19 has hit the disability community extremely hard. People with disabilities, particularly people with disabilities in congregate settings and the people who provide their services, are experiencing high rates of infection and death, and this impact is magnified in communities of Black and Brown people, Native Americans, and immigrant communities. In this era, we have utilized the ADA and other disability rights laws to oppose illegal disability discrimination in treatment rationing protocols being developed in response to COVID-19. But more must be invested into the home and community-based system so that people with disabilities can be safe and stay in their homes and communities. We continue to champion the #WeAreEssential campaign, because we must sustain the fight for the lives of people with disabilities and to dismantle the serious and still pervasive remnants of discrimination on the basis of disability.
We know that the intersection of disability with poverty and racism increases the prejudice and harm that many people experience. Right now, our nation is engaged in social justice and civil rights struggles to address systemic racism and violence. As we renew our commitment to the ADA, and the charge to eliminate unjustified segregation and exclusion of people with disabilities from American life, The Arc reaffirms our goal to protect against forms of discrimination based on disability, race, sex, gender identity and expression, sexual orientation, national origin, or any other protected status. We will keep fighting to defend the rights and lives of people with disabilities and their families, and advance toward full integration and inclusion for all.