Kids will suffer because of medical card cuts

by Pat Flanagan from the Irish Mirrior:
Head of Down Syndrome Ireland backs our campaign to change law for children's health

The law must be changed or all children with Down Syndrome will not receive a medical card, it was claimed on Wednesday.
The head of Down Syndrome Ireland said the practice of awarding cards on the basis of a child’s financial situation – not the state of their health – must stop.
The Irish Mirror is campaigning to have the 1970 Act changed to allow all children with the condition to receive a medical card.
At present, even youngsters who are severely ill cannot get a card if their parents are earning as little as €5 over the cut-off limit.
Down Syndrome Ireland boss Pat Clarke said HSE officials, who have asked if children with the condition have got better, are totally out of touch.
He insisted: “The law needs to be changed and we’ve been asking for this for some time.
“Many, many years ago there were the county medical officer in each region who looked at each individual case and would know these individual people and be able to assess the medical condition all these children with Down Syndrome had.

Primer: How Will The Election Change Medicaid?

By: Phil Galewitz and Kaiser Health News

The future of Medicaid -- the state-federal workhorse of the nation's health system that provides health coverage to the poorest and sickest Americans -- hangs in the balance on Election Day.
President Barack Obama and Republican nominee Mitt Romney have vastly different approaches to the program. Medicaid is the backbone of the 2010 health law -- considered Obama's signature legislative achievement -- which, starting in 2014, expands coverage to 30 million uninsured Americans. As many as 17 million of those newly insured citizens will be on Medicaid. Romney would turn over much control of the program to states and give them new powers to tailor benefits and eligibility to their own budget needs. Romney says such a move would begin saving $100 billion per year by 2016.
The following list of "frequently asked questions" provides more details on the presidential candidates' plans for Medicaid.
Tune in to the PBS NewsHour on Monday evening for Hari Sreenivasan's full report on the role Medicaid plays in the U.S. health care system -- especially for seniors living in nursing care facilities -- and how the proposals outlined by the candidates could impact the program.
What is Medicaid?
Created in 1965, Medicaid is jointly financed by the federal government and the states. States administer the program but the federal government sets minimum income and eligibility thresholds, targeting low-income children and their parents, the elderly and people with disabilities. It also sets minimum benefits that state Medicaid plans must provide. States can build on these requirements and, as a result, eligibility rules vary widely. The program now covers about 60 million Americans, of which about half are children. Medicaid pays for nearly two-thirds of nursing home residents and about 40 percent of births.
Medicaid is an open-ended entitlement program in which the federal government matches state spending on health insurance. Match rates range from 50 percent to 73 percent, depending on a state's per capita income, with poorer states receiving higher rates. The average federal match is 57 percent.
How does President Obama's health care reform law change Medicaid?
The 2010 law eliminates varying eligibility rules and, starting in 2014, provides Medicaid coverage to everyone with incomes less than 133 percent of the federal poverty level, which today is nearly $31,000 for a family of three.
This expansion could add as many as 17 million people to Medicaid over the next decade if all states adopt the change. Most of the newly eligible would be adults without children who currently are not covered in most states.
The Supreme Court ruling which upheld the health care reform law made this expansion optional for states. Several Republican governors have already said they would not take the extra federal money to expand the program.
Under the law, the federal government pays the full cost for those newly eligible for Medicaid from 2014 to 2016, then states have to begin to contribute to the cost but no more than 10 percent by 2020. States will receive their current federal funding match rate for people currently eligible.

Fewer services for patients with Down syndrome who are affected by Alzheimer's

  by Susan Abram from Pasadena Star News: She had learned to care for herself, to work and count her money so she could buy food, set the table, tell time and use a phone to dial 911. Now 60 years old, Denise Steinberg is forgetting the little things. She puts her blouse on backwards or her pants on inside out. Her attention span has dwindled. She is acting out toward her roommates. "I'm seeing the signs more and more, and I'm freaking out because where is she going to go?" asks Terri Budow, Denise's younger sister. "I love her and I want her to be around people who care and who love her, too." Steinberg was born with a developmental disability at time when she and people like her expected to live only until they were 30 years old. Now, she is part of an unexpected trend: Those with Down syndrome or other development disabilities are living longer, but in some cases, not necessarily better. More than 90 percent of those with Down syndrome develop Alzheimer's disease by the time they are in their late 40s. "This is something the community has never had to deal with before," said Roschell Ashley, director for residential services for New Horizons. The nonprofit New Horizons formed in the San Fernando Valley in 1954 to help those with developmental disabilities learn life skills, find employment and receive housing. But a new need has emerged. As their clients age, New Horizons saw that its group homes were not adequate

for elder clients with Alzheimer's and dementia. Of the nearly 700 clients the agency serves, more than half are 40 years or older. So in 2008, the agency began plans for a six-bedroom group home just for those with Down syndrome who develop Alzheimer's, one of only a handful in California and nationwide.

Participate in a study on delivery of Down syndrome diagnosis

To Whom it May Concern,

My name is Jane Goodwin and I am a student researcher at the University of Newcastle, Australia. Currently, I am working with Dr Linda Campbell (chief investigator) on an investigation into parents' and caregivers' experiences regarding the diagnosis of Down syndrome. Specifically, we are interested in the diagnosis experience, how the children were told, and coping methods used. We are also looking at caregivers' and parents' concerns around telling their children about the syndrome. This project has ethics approval from the University of Newcastle's Human Research Ethics Committee. Approval No. H-2012-0129.

To investigate this, a 20 – 30 minute questionnaire has been created which can be found at www.wix.com/c3094005/geneticdisorders. We hope that the results of the study will provide a better insight into the parental disclosure process and that this in turn will improve healthcare models and processes associated with the care relating to this syndrome.

Link to our study website (www.wix.com/c3094005/geneticdisorders). We are seeking people 18 and over who are either a parent or a caregiver of an individual with Down syndrome.

If you have any questions or concerns, please contact myself (c3094005@uon.edu.au) or Dr Linda Campbell (Linda.E.Campbell@newcastle.edu.au).


Thank you for considering this request,

Jane Goodwin and Linda Campbell

Canada bars a family immigrating because their daughter has Down syndrome

from CTV.ca and the Canadian Press:
A New Democrat MP is demanding the federal government reverse a decision to bar a family from India from immigrating to Canada to join their son in B.C. because their adult daughter has Down Syndrome.

The son, Kevin Patel of Vancouver, wanted to sponsor his parents and sister to come to Canada to become permanent residents.

But Immigration Canada rejected the request because it says his sister's condition could pose an excessive burden on Canada's health and social services.

"Are we looking at immigration as a nation-building exercise?" Patel said at a news conference as he questioned the government's priorities.

"Or are we looking at immigration as a commercial project where we only bring in young people, only smart people, so that they can fund our economy? Should we treat immigrants as a commodity and not as person or as a family?"

NDP citizenship critic Don Davies said the government's conclusion is not supported by any facts and is instead based on stereotypes of people with Down Syndrome.

Davies, who outlined his concerns in a letter to Canadian immigration officials based in India, described the daughter's condition as "mild Down Syndrome."

"Your officer has come to the disturbing and baseless decision that, while she would not be an undue burden on Canada's medical system, the mere fact she has Down Syndrome means she would be an undue burden on Canada's social security system," Davies writes in the letter, issued to the media on Friday.

"This conclusion is not supported by any facts, is contradicted by the evidence submitted in this case and, with all due respect, represents an outdated stereotype of a person with Down Syndrome that is not in keeping with modern understanding of people with this condition. Frankly, it represents a bigoted and discriminatory view that is unacceptable in 2012."

Davies said Patel, whose legal given name is Kaivalya, has been living in North American since 2000. He is currently working as a certified general accountant.

He applied in 2006 to sponsor his mother, father and sister to come to Canada, and that application was granted in 2008, according to Davies. The family submitted an application for permanent residency in 2009, and have since undergone medical exams and submitted financial information.

"The family has complied with all the requests your office has placed on them and they have also affirmed repeatedly that Aditi (the daughter) does not have any special medical, para-medical or respite care needs," Davies writes.

"Aditi has been extremely self-reliant, physically independent and healthy as an individual. On the contrary, Aditi has demonstrated great skill in knitting, candle and incense making as well as outdoor sports, for which her medals and certificates as well as inter-state trips for badminton competition are a testament."

Davies said if immigration officials refuse to grant the Patel family entry into Canada, the country will have failed Kevin Patel and denied him the opportunity to have his family live in this country with him.

Immigration Minister Jason Kenney was unavailable to comment on the story Friday, though his communications director, Ana Curic, responded on his behalf.

Curic wrote in an email that she couldn't discuss the Patels in detail because of privacy laws, but she said Kenney's office contacted Davies on Friday for more information and staff are looking into the case.

"Generally speaking, decision makers at (Citizenship and Immigration Canada) must apply the Immigration and Refugee Protection Act as it is written," wrote Curic.

"Under (the act,) which came into effect in 2002, permanent resident applicants and their immediate family members must be medically assessed to determine if they pose a danger to public health or public safety, and whether their presence would pose an excessive demand on Canada's health and social services systems."
She continued: "Excessive demand is based on anticipated health and social service costs over a five- to 10-year period and/or the potential impact on waiting lists.

"Canada's immigration law does not discriminate against those with illness or disability. It does strive, however, to find the appropriate balance between those wanting to immigrate to Canada, and the limited medical resources that are paid for by Canadian taxpayers."

Medicaid - get it while you can

One in three children nationwide rely on health services provided through Medicaid. Politicians from at least five states have threatened to withdraw from the Medicaid program, and nearly all state governments have taken or are currently considering steps to reduce their Medicaid costs.

While states are prevented from redefining eligibility standards to exclude currently eligible children, they may eliminate coverage for services not specifically required by federal Medicaid regulations, like prescription drugs, dental care or therapy services. Mississippi, for example, has already cut benefits for children with mental health conditions and disabilities like Down syndrome and cerebral palsy.

• Cutting Heathcare for Children? Bad Medicine for a Broken Economy

Kendra Huglin has Down syndrome and she explained to lawmakers that she soon hopes to become independent, but would rely on weekly check-ins as a safety net for crisis help. But the current plans in Idaho would cut those benefits.

• Slashing millions from Medicaid: Joint committee takes testimony

Advocates are concerned that they may lose the last bit of funding they receive from Kansas state grants, about $3.5 million, which Gov. Sam Brownback has indicated he may cut from the 2012 budget. More than 300 recipients who depend on the grants because they aren't eligible for Medicaid would suddenly be without any government support, according to Starkey officials.

• Developmentally disabled Kansans meet with legislators

GAO's analysis of data showed children with Down syndrome received, on average, five times more outpatient care (such as care in an urgent care facility) and over two times more office-based care (such as care in a physician's office) than children without Down syndrome. In addition, children with Down syndrome have an increased risk of certain medical conditions and were hospitalized, on average, nearly twice as often and stayed twice as long as other children. The total average medical expenditures for children with Down syndrome were an average of five times higher than those for other children. However, both total expenditures and the difference in expenditures decreased substantially as the two groups of children reached 3 years of age.

• Children with Down Syndrome: Families Are More Likely to Receive Resources at Time of Diagnosis Than in Early Childhood

How to Apply for Medicaid:

1. Understand that Medicaid is a state-run program that provides medical insurance. Each state has different eligibility requirements and different application procedures.
2. Know that if you receive SSI (Supplemental Security Income) from the Social Security Administration, you will probably qualify for Medicaid, but you can also get Medicaid without having SSI.
3. Recognize that there have been recent limits placed on this program at the federal level, so the benefits are not as wide as they used to be.
4. Contact your local state Department of Social Services or Human Services to apply. Your state may have a different name for this agency. It is the agency that provides food stamps and financial assistance. Call your county building and ask for the name of it if you don't know it.
5. Ask for a Medicaid application. You will need to complete it and they will arrange an interview to review your application.
6. If you are denied you have the right to appeal the decision. Many people have experiences where they are not approved on the initial request but on the 2nd or 3rd appeal.