With elections around the corner we are all being inundated with advertisements from both ends of the political spectrum. All the focus seems to be on the candidates when the most important people in any election are the voters. That’s right – you are the most important part of this election.
Too often we forget that voting is not only a right but a way to empower ourselves. Our vote represents our beliefs and our hopes for our nation. It is also an opportunity for us to tell those leading our country what we expect them to be doing. It isn’t just about what is happening in Washington, DC, the right to vote can influence what happens in your backyard. Each time you vote you empower yourself, and you make sure that your opinion matters.
Take the first step to empowering yourself and register to vote today!
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354The Arc/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngThe Arc2012-10-03 10:00:142021-11-15 16:18:28Register to Vote: The First Step to Empowering Yourself
The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (IDD) who also have Alzheimer’s disease or other forms of dementia. AIDD wants to learn more about addressing the needs of specific populations disproportionally affected by Alzheimer’s disease, like people with Down syndrome.
If you are a family member of a person with IDD who also has Alzheimer’s or dementia, AIDD is specifically looking for your experience with the following topics:
Accurate and timely diagnosis;
Access to care;
Education on Alzheimer’s disease for practitioners who do not normally specialize in care for people with Alzheimer’s disease; and
Special considerations for these populations.
Responses should go directly to Dr. Mette Pedersen at mette.pedersen@acf.hhs.gov and Matthew Janicki at the University of Illinois at Chicago, mjanicki@uic.edu by September 25, 2012.
We at The Arc appreciate your willingness to share your thoughts with AIDD. The more they hear from people directly involved with the care of people with Alzheimer’s and IDD, the better chance we have at making progress in addressing the needs of people with IDD.
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354Maureen Fitzgerald/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngMaureen Fitzgerald2012-09-19 09:50:232021-11-09 15:51:27The Federal Government Needs Your Input on IDD and Alzheimer’s Disease
Health Insurance Reforms in the Affordable Care Act (ACA)
Eliminates pre-existing condition exclusions
Bans annual and lifetime limits
Ends the practice of rescissions (insurance coverage is cancelled when a person develops a serious health condition)
Improves appeals process including independent reviews
Requires that 80% of health insurance premium dollars are paying for health care
Enhances state capacity to regulate unfair increases in insurance rates
Prohibits considering health status in calculating premiums (2014)
Requires guaranteed issue and renewals (2014)
Prohibits discrimination based on health status (2014)
The ACA Expanding Access to Coverage
Establishes temporary high risk pools to cover those who are currently uninsured (until 2014)
Allows coverage for dependents until age 26
Creates health insurance Exchanges for individuals and small employers to purchase insurance (2014)
Provides significant subsidies to assist low income individuals to purchase coverage in the Exchanges and provides tax credits to help small employers
Includes coverage of dental and vision care for children in the Exchanges
Includes mental health services, rehabilitative and habilitative services and devices, and other critical disability services in the health plans sold in the Exchanges
The ACA Expands Medicaid
Expands Medicaid eligibility to 138% of the federal poverty level
New method of income disregards
No asset test
16 million new beneficiaries by 2019
Federal government pays 100% till 2016 (phase down to 90% in 2020)
The ACA and Long Term Services and Supports
Establishes the Community First Choice Option for states to cover comprehensive community attendant services under the state’s optional service plan
Improves existing Section 1915(i) option for home and community based services
Creates a new state balancing incentives to reduce institutional bias of Medicaid
Extends “Money Follows the Person” Demonstration
Authorizes the CLASS program
Other Medicaid and Medicare Improvements
Gives states the option to provide health homes for Medicaid enrollees with chronic conditions
Allows a free annual Medicare well visit with assessments and individualized prevention plan
Eliminates Medicare Part D (drug coverage) co-pays for dual eligibles receiving waiver services
Improves Medicare Part D access to key anti-seizure, anti-anxiety and anti-spasm medications
Selected Prevention, Provider Training, Data Collection and Accessibility Issues Addressed by the ACA
Eliminates co-pays for critical prevention services
Creates the Prevention and Public Health Fund (PPHF) to provide new funding for transformational investments in promoting wellness, preventing disease, and other public health priorities
Increases opportunities for training of health care providers (including dentists) on the needs of persons with developmental and other disabilities
Authorizes new training programs for direct support workers who provide long term services and supports
Improves data collection on where people with disabilities access health services and where accessible facilities can be found
Adds disability as a category to measure health disparities and in health care quality reporting surveys
Requires the establishment of criteria for accessible medical diagnostic equipment
Key Disability Data Regarding Access to Health Care
According to the Centers on Medicare and Medicaid Services (CMS):
15% of the uninsured have at least one disability (HHS/ASPE Analysis of 2010 CPS self-reported data)
12% of uninsured adults with incomes below 138% of the federal poverty level report limited ability to work or unable to work (Urban Institute Analysis of 2006 MEPS data)
Altman, B. Bernstein A. Disability and health in the United States, 2001-2005. Hyattsville, MD National Center for Health Statistics 2008
Adults 18-64 with cognitive difficulty, 13.6 % had no insurance, 32.1% private insurance, 41.0% Medicaid, and 27.0% Medicare.
Adults 18-64 with disabilities are less likely than those without disabilities to have private health insurance coverage – 46.3% for those with complex activity limitation and 61.3% with basic actions difficulty (61.3%) compared to 75.2% with no disability.
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Care Needs in Context: A Portrait of States and the Nation 2007. Rockville, MD: U.S. Department of Health and Human Services 2011.
Children with special health care needs – 29. 4% had inadequate coverage compared to 22.1% of children without special health care needs. Inadequate insurance is a far more prevalent problem than gaps in insurance or lack of insurance among children with special health care needs. (29.4% inadequate insurance whereas 12.3% had gaps in insurance or no insurance).
Children with special health care needs have unmet needs for specialty medical care—27% had problems accessing specialists and of the children with emotional, behavioral or developmental conditions, 48.4% did not receive mental health services.
Children with special health care needs are defined in the National Survey of Children’s Health as those who have one or more chronic physical, developmental, behavioral or emotional conditions for which they require an above routine type or amount of health and related services. 14-19% of children in the U.S. meet this need.
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354The Arc/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngThe Arc2012-06-28 13:37:122021-11-09 15:55:59Top Reasons Why The Arc Supports the Affordable Care Act
This April we celebrate the 44th anniversary of the Fair Housing Act, a powerful law that fights housing discrimination and opens doors for people with disabilities across the U.S. This year’s theme is “Live Free: Creating Equal Opportunity in Every Community.”
Fair Housing Month events are being held all across the country.
What Is The Fair Housing Act?
The Fair Housing Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex (gender), familial status, and disability. Under the Fair Housing Act, it is unlawful to discriminate in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that person, a person associated with the buyer or renter, or a person who plans to live in the residence. For example:
The Fair Housing Act requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space and common spaces (landlords are not required to pay for the changes).
The Fair Housing Act requires landlords to make reasonable exceptions in their policies and operations to afford people with disabilities the opportunity to use and enjoy their housing. A landlord with a “no pets” policy may be required to grant an exception for a tenant who uses a service animal.
The Fair Housing Act prohibits lenders from imposing different application or qualification criteria on people with disabilities, or inquiring about the nature or severity of a disability (except in limited circumstances). The U.S. Department of Housing and Urban Development (HUD) recently charged Bank of America with discrimination against people with disabilities.
The Fair Housing Act requires that new multifamily housing with four or more units be designed and built to allow access for people with disabilities.
It’s been over 4 decades since President Lyndon B. Johnson signed the Fair Housing Act into law. There’s much to celebrate, but also much work to do. People with disabilities increasingly want to live in the community in a home that they rent or own. Unfortunately, far too many find that discrimination limits their options: disability-based discrimination is the top reason for Fair Housing Act complaints submitted to HUD.
What Can You Do?
If you suspect discrimination, you can file a complaint with HUD online or by calling 800-669-9777, or TTY 800-927-9275. You may also file a lawsuit in court. Contact a local fair housing agency for guidance and help filing a complaint.
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354TJ Sutcliffe/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngTJ Sutcliffe2012-04-18 10:00:182021-04-14 15:27:47April Is Fair Housing Month
Right now, Congress and the President are debating how to cut federal spending to bring down the deficit. Unfortunately – and almost unbelievably – people with intellectual and developmental disabilities are prime among those who may bear the brunt of many of the proposed funding cuts and policy changes.
There are many proposals being discussed in Washington to balance the budget. What they have in common is that Medicaid spending would need to be dramatically cut in a short period of time. They include:
Block Granting Medicaid: This policy, which was passed in the House’s 2012 Budget Resolution, would give states a fixed amount of money for health care and long term services and would likely remove requirements for how the states spend the money. Funding and services could evaporate, as financially strapped states took aim at programs without powerful constituencies and tightened eligibility for other programs.
Spending Caps: These would set an overall limit on federal spending that is well below current levels and would likely result in a Medicaid block grant (see above). Both houses of Congress may vote this week on a measure that could ultimately force such drastic cuts to occur.
Cuts to Medicaid are on the table in all of these proposals, directly or indirectly, and that alone requires us to act! Time is short.
What would these cuts mean for people with disabilities? There would be no guarantee of services. People with disabilities could be denied:
Health insurance coverage
Home and community based services
What can we do?
We expect Congress to vote on legislation to cut the deficit before the end of July, and we don’t know yet what that will mean for Medicaid. Now is the time to tell your Senators and Representative what Medicaid means to you and your loved ones and friends with IDD, and tell them “Don’t Cut Our Lifeline!”
The budget cannot be balanced on the backs of people with intellectual and developmental disabilities.
Deep cuts in Medicaid cannot be tolerated – including block grants and spending caps that impact Medicaid.
Medicaid and programs that serve low-income people must be exempt from deficit reduction plans.
Share your story! There is nothing more powerful than sharing your personal experience, so please tell your elected official about your support service needs.
Don’t Cut Our Lifeline!
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354Ralph Scott/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngRalph Scott2011-07-20 15:53:262021-10-21 15:05:50Possible Medicaid Cuts and What You Can Do
On Wednesday, July 6th, the O’Brien family from Waycross, Georgia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.
Deirdre O’Brien has two children, including her 13-year-old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.
“Without Medicaid, our family’s life would revolve around illness, not health and happiness. Clare gets the care she needs from her family and from the staff paid for by Medicaid funds, and I can continue to work. Medicaid is a lifeline for us, and the White House needs to hear our story and the stories of the thousands of families like ours in Georgia,” said Deirdre O’Brien.
This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.
On Wednesday, July 6th, the Keaton family from Milton, West Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting was for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.
Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome (22q11.2 deletion syndrome) is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects – Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.
“Drastic cuts in Medicaid would force me to quit my job to take care of Graysen, as I couldn’t afford the nursing care without it. Medicaid is our lifeline, and I’m going to urge the White House to keep the nation’s commitment to provide for the most vulnerable, like my son, so that he can continue to live with us and we can keep our jobs and our home,” said Amanda Keaton.
This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.
On Wednesday, July 6th, the Brandt family from Springfield, Virginia joined The Arc and other families that would be affected by Medicaid cuts in a meeting with key staff at the White House. The purpose of the meeting is for the White House to hear how Medicaid cuts would affect each family’s circumstances as President Obama continues to engage in deficit reduction talks.
Carrin and Mitchell Brandt are parents of 10-year-old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-term support needs, such as residential and day support.
“If we lost Medicaid, it would jeopardize my husband’s small business, and one of us would have to give up our jobs. Bailey’s life and health could dramatically change, as she wouldn’t be able to participate in our community and continue to grow to be as independent as possible. We don’t want to ever see our daughter living in an institution, but without Medicaid, we don’t know what our future holds,” said Carrin Brandt.
This video was produced and edited for The Arc by INFOCUS NEWS, a supported employment program for individuals with intellectual and developmental disabilities. The primary goal of “INFOCUS NEWS” is to provide employment for individuals with intellectual and developmental disabilities who have been trained in various aspects of video news production; from writing news scripts, to anchoring/reporting stories, camera operation, video editing, lighting, sound engineering, and studio management.
In 2010, The Arc conducted a national internet survey to capture the perspectives of people with intellectual and or developmental disabilities (IDD) and their family caregivers. Much of the data supports The Arc’s Don’t Cut Our Lifeline campaign. The Family and Individual Needs for Disability Supports (FINDS) survey focused on issues including educational, housing, employment and support needs of people with ID/DD and their families. More than 5,287 family respondents participated in the survey; of these, three-quarters shared their home with a person with ID/DD. Overall, 95 percent of respondents were parents, siblings, children, grandparents or other relatives of a person with ID/DD.
Family caregivers in 2010 reported substantial ongoing challenges to providing lifelong supports to family members with intellectual or developmental disabilities. People with ID/DD and their families face very real challenges to achieving their aspirations for the future, and decreasing benefits from Medicaid will only continue to hamper such aspirations and millions of lives.
Supports provided by Family Caregivers
Most family caregivers (58%) provide more than 40 hours of unpaid care per week and 40% provide more than 80 hours of unpaid care per week. This interferes with their work (71%) and causes physical (88%) and financial strain (81%).
Nearly two-thirds of family caregivers (62%) are paying for some care out of pocket. Family caregivers struggle to find afterschool care (80%), reliable home care providers (84%) and community-based care (82%).
They report paying for more services out of pocket (47%) and providing more support than they used to (41%).
Fifty-two percent (52%) of families use Medicaid funds to pay for long term care services and supports, primarily through the Medicaid HCBS Waiver program;
People with severe ID/DD were more likely to have reported getting supports from a family member paid through the HCBS Waiver program (59%), while people with mild ID/DD were more likely to have received supports from a family member paid out of personal or family sources (56%), most often the personal income of a parent, family member or other caregiver.
Challenges
Family caregivers report that 25% of the people with ID/DD had no source of
income. Only 15% of the people reported being employed.
Overall, 62% report experiencing decreases in services and 32% were waiting
for government funded services, most for more than 5 years.
20% of family caregivers reported that someone in the family had to quit their job to support the person with ID/DD.
More than 40% of family caregivers reported the person with ID/DD had unmet support needs during the last year for running errands or seeing a doctor (48%), managing finances (46%), transportation (45%) and household management (41%).
43% report that schools have cut back on services such as physical, occupational or speech therapies;
Nearly two-thirds of all family caregivers worry that the person they care for might have to go somewhere they don’t want to live.
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354Kristen Bossi/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngKristen Bossi2011-07-06 14:00:432021-11-11 15:52:33FINDS Survey Facts to Support “Don’t Cut Our Lifeline” Campaign
Having information that is specific to your state and/or Congressional district can be very helpful in educating and persuading your Members of Congress. We have identified a few such credible sources of Medicaid data:
The Medicaid and Children’s Health Insurance (CHIP) Payment Advisory Committee, known as MACPAC, provides state-specific information about program enrollment, spending, eligibility levels, optional Medicaid benefits covered, and the federal medical assistance percentage (FMAP), as well as an overview of cost-sharing permitted under Medicaid and the dollar amounts of common federal poverty levels (FPLs) used to determine eligibility for Medicaid and CHIP. It also provides information that places these programs in the broader context of state budgets and national health expenditures. View the report.
https://thearc.org/wp-content/uploads/2019/07/new-blog-default-image.png377354Kristen Bossi/wp-content/uploads/2019/07/ArcLogo_Color_Rev_PNG_WEB.pngKristen Bossi2011-07-05 13:30:422021-11-11 15:52:11Find Medicaid Data State by State
