Planning a Future For a Child with Down Syndrome

Friends and family of children with Down Syndrome often find social networks like Facebook to be a wonderful forum in which to share information, interesting experiences with their children and, ultimately, to express their doubts and sometimes, even their insecurities about a myriad of issues. Recently, when viewing one such page, we came across an interesting question posed by the mom of a toddler with Down Syndrome called Ryder. While Ryder’s mother had already set up savings account for the future University and car expenses of her older children, she wondered how to plan financially for Ryder’s future. She said that she was unsure why she had not yet started a savings fund/established a special needs trust for him, and asked advice from followers of her page as to what steps they had taken – the answers were as swift as they were helpful.

In Ireland, half of children with Down syndrome 'at risk of losing vital aid'

from Irish Independent:

Up to half of the country’s children with Down’s syndrome are at risk of losing their discretionary medical cards, a leading advocacy group has revealed.

Down Syndrome Ireland says that hundreds of children with the disability have already lost the medical benefit.
It also believes that children with Down’s syndrome will not receive discretionary medical cards – based on health needs rather than income - at birth.
Around 2,000 children under the age of 16 are estimated to have the condition in Ireland.
While the HSE hasn’t furnished figures on the number of children with Down’s syndrome who have lost their card, it says those who are not entitled to the cards are having them withdrawn.
Pat Clarke, CEO of Down Syndrome Ireland said “we would feel that 1,000 children are at risk”.
“This adds an additional burden to parents for both doctors fees and prescriptions.”
“Where there are people with Down Syndrome, there are a lot of attendant costs that aren’t taken into account like babysitting services or the fact that one parent may have to give up their job.”
“We have received correspondence from almost 150 parents who are worried about this, and we’re trying to advise them on what they can do,” he said.
Parents can appeal the decision, Mr Clarke said, and the advocacy group is now advising them on how to do so.
At the Dail’s Public Accounts Committee on November 14, HSE officials could not provide answers to questions on how many of the 6,324 discretionary medical cards removed following review, were from children with Down’s syndrome.

LEAD Coalition Urges Swift Action on ABLE Act

from the LEAD Coalition:
Sixty-one LEAD Coalition member organizations and supporters wrote to congressional sponsors of the Achieving a Better Life Experience (ABLE) Act of 2013 (S. 313/H.R.647) encouraging enactment this year. Read the letter.

Today, over five million Americans have Alzheimer’s disease -- and millions more

have vascular, Lewy body or frontotemporal dementia. It is expected that 13

million or more Americans will have Alzheimer’s disease by 2050, barring a major

scientific breakthrough in the near-term. For many individuals and families facing

the enormous financial toll of a typically decade-long battle with Alzheimer’s

disease or a related dementia,

i the ABLE Act will provide an important tool to

avoid impoverishment and dependence on public assistance programs. This is

consistent the intent of the National Alzheimer’s Project Act (Public Law 111-375)

and the resulting National Plan to Address Alzheimer’s Disease Goal 3, Strategy

3.C: Assist Families in Planning for Future Care Needs

ii.

LEAD

Leaders Engaged on Alzheimer’s Disease

The ABLE Act will allow individuals with physical, intellectual or cognitive

disabilities and their families to save their private funds for the future just like

every other American. The ABLE Act builds upon a highly successful taxdeferred

education savings platform to begin addressing the challenges of paying

for quality long-term care services by establishing a new subsection within

Section 529 of the Internal Revenue Code. Individuals with disabilities would be

permitted to establish ABLE accounts into which they and others could make taxdeferred

contributions. ABLE account funds then could be used for essential

expenses including medical and dental care, community-based supports,

assistive technology, housing and transportation. Such qualified expenditures

would supplement, but not supplant, benefits provided through private insurance,

Medicaid, Supplemental Security Income (SSI), the beneficiary’s employment,

and other sources. The legislation also contains Medicaid fraud protection

against abuse and a Medicaid payback provision when the beneficiary passes

away.

Census Bureau Report Shows 30 Percent of Adults Receiving Government Assistance Have a Disability

from theUnited States Census Bureau:
Among the 46.0 million adults who received income-based government assistance in 2011, 30.4 percent of them had a disability, according to a report released today from the U.S. Census Bureau.
The report, Disability Characteristics of Income-Based Government Assistance Recipients in the United States: 2011, offers information about the occurrence of disabilities among people 18 and older who received income-based government assistance. The information is based on data from the 2011 American Community Survey.
"On average, people with disabilities have lower employment and earnings; therefore, understanding what assistance people with disabilities receive may help governments better coordinate and administer their programs," said Bernice Boursiquot, a Census Bureau statistician and co-author of the report.
People with a disability include those having vision, hearing, cognitive, ambulatory, self-care or independent living difficulties. Among recipients of public assistance, 18.2 percent had difficulty walking or climbing stairs, 14.6 percent had trouble leaving home to go shopping or visit the doctor without assistance, and 14.2 percent encountered trouble with memory, concentration, or making decisions.
Recipients received assistance in three forms: cash assistance (cash or money income), in-kind assistance (services, goods or vouchers) or both cash and in-kind assistance. Among people who received both cash and in-kind assistance, 58.3 percent had a disability. Among recipients of only cash assistance, 33.2 percent had a disability. Recipients of only in-kind benefits had the lowest disability rate at 22.6 percent.
This report also found that 22 states had disability rates above the national estimate of  30.4 percent among those receiving assistance. In comparison, 15 states had rates below the national estimate.
States west of the Appalachian Mountains had higher rates of disability among recipients of income-based assistance. In comparison, states in the Southwest and along the Eastern Seaboard had lower rates.
West Virginia, Kentucky and Arkansas were three of the top five states for disability prevalence in the total population, as well as in the total population receiving government assistance. In West Virginia, 26.8 percent of people with disabilities reported having ambulatory difficulty, defined as severe difficulties walking or climbing stairs.