November 2005 Issue
There are no scheduled parent support group meetings for the remainder of the year.
This issue is in memoriam of Phillip Telford III, 21, who died Oct. 28, 2005. He graduated from Alton High School in 2003. He worked in the cafeteria at Saint Anthony's Health Center, through the hospital's work program. He is survived by his parents of Alton; his grandparents, Patricia Yauch of Wood River and Ella Telford Sr. of Alton. We reprint the third and last excerpt of Adventures in the Mainstream. Coming of Age with Down Syndrome by Greg Palmer, an award-winning writer since 1968 and producer of PBS documentaries and plays for families which chronicles two of the most important years in the life of his son, Ned, the time when he's making the transition from high school to work. His essay He Canters When He Can appears in Uncommon Fathers (Woodbine House, 1995).
"This extraordinary book should be read by every parent of a child with Down syndrome! With exquisite detail and eloquent personal intimacy, Greg Palmer shares with us every aspect of parenting a young adult with Down syndrome. The joys, disappointments, fears, rewards, challenges, and the overwhelming love and pride - it's all here, beautifully told with humor and passionate authenticity. The book resonated with me on every page!"
— Emily Perl Kingsley, Emmy-Award-winning writer for Sesame Street, and former member of the National Down Syndrome Congress Board of Directors.Mother/Daughter High Tea at the Chase
On August 20, 2005, the Pujols Family Foundation hosted a Mother/Daughter High Tea at the Chase Park Plaza, in the Central West End (St. Louis).
This event was by invitation only and was limited to those Mother's who have daughters with Down syndrome. The tea featured mother/daughter portraits, makeovers, cookie decorating and other activities. Deidre Pujols was the keynote speaker at the High Tea. Over 180 guests were in attendance.
This publication is for information only. Before making any financial decisions, please consult your benefits specialist, financial advisor or attorney.
Medicaid is a public medical insurance program funded jointly the Federal and State governments. Medicaid is designed to assist individuals and families with low incomes and few resources. In order to receive Federal funds, individual states must provide Medicaid coverage to most individuals who receive Federal income assistance, such as SSI, as well as to certain other groups who do not receive cash payments.
Medicaid is an important benefit to people with special needs if they do not work for an employer that offers comprehensive group health insurance. Many people with disabilities cannot qualify for private health insurance-at least not at affordable rates. Moreover, many state programs for people with disabilities are funded through Medicaid Home and Community-based Services (HCBS) Waiver Program and you must be Medicaid eligible to access them.
In many states, including Illinois, for persons with a disability, the eligibility requirements for Medicaid are the same as those for SSI. This means that you qualify for Medicaid if you
For Medicaid purposes, 'to have a disability' is defined primarily in terms of capacity to earn money. A person is considered to have a disability if he or she has a physical, cognitive or emotional impairment which makes him or her unable to engage in Substantial Gainful Activity (SGA). For 2004, SGA is defined as employment which can generate $810/month in countable income. This means that if you have impairment and cannot earn that amount on a regular basis, you have a disability for Social Security purposes.
Blindness is considered separately from other disabilities. For Social Security purposes, the designation 'blind' in SSA terms also has income criteria, but for historical reasons, it has been indexed for inflation and it currently significantly higher. If you are blind, your employment is considered Substantial Gainful Activity if you can earn more than $1,350/month.*
Yes—and not only to children with special needs. Illinois sponsors KidCare and FamilyCare to assist any children and parents of minor children who have low income and would otherwise have no health insurance. Income requirements depend on the size of the family; for instance, a family of two can earn up to $1,384/month; a family of four can earn up to $2,089/month. Moreover if the parent(s) work, pay for child care or pay child support, they may be eligible at even higher income levels.
Yes. As with SSI, you cannot have more than $2000 in countable liquid assets ($3000 for a couple/family) and continue to receive free Medicaid coverage except under the Ticket to Work program, which we will discuss below. Examples of countable liquid assets include: savings and checking accounts, mutual funds, stocks and bonds. Your residence, home furnishings, clothes, small, non-cash-value life insurance policies, primary vehicle below a certain market value and some other assets do not count toward the $2000 limit. Money set aside in a Ticket-to-Work PASS account does not count towards the $2000 limit. We will introduce aspects of the Ticket-to-work program and PASS accounts in a later issue.
For more specific details on income and asset calculations for your particular situation, please contact your SSA benefits specialist, case manager or financial advisor. Contact information can be found in the sidebar on the first page of this newsletter.
If your trust is a properly written special needs trust, the trust assets will not preclude Medicaid eligibility. To insure that your trust is properly worded, please consult an attorney with experience writing special needs trusts. There are two basic kinds of special needs trusts:
If you transition from welfare to work under the Ticket to Work and Work incentives Act of 1999, you may continue your Medicaid coverage through the Medicaid buy-in program as long as your annual income is less than 200% of the federal poverty level and you have less than $10,000 in assets, excluding any assets in trust as above or any assets accumulated under an approved Plan to Achieve Self-Sufficiency (PASS). We will discuss PASS in detail in a later issue. Medicaid buy-in premiums vary according to income. Please contact your local Medicaid and/or Social Security office for specific figures.
The HCBS Waiver program allows states to use Medicaid dollars to fund in-home and out-patient services without which the persons served might require institutional care. Examples of such services include homemaker/home health aid services, personal care services, adult day programs case management, respite, prevocational, educational and supported employment services and day treatment/ partial hospitalization and psychosocial rehabilitation services for individuals with chronic mental illness.*
|Credit: Ms. Bailey's 1999 school photo|
I believe that there are certain seminal cultural experiences one should have if at all possible, and I've been lucky to have some of them. Mine have been especially musical, including hearing in person Ray Charles, Ella Fitzgerald, Miles Davis, Simon and Garfunkel, and Lena Horne. I've been to a Yankees game, seen Yul Brynner and Carol Channing in the roles that made them legends, and been in Laurence Olivier's audience twice and Dame Edna's once.
To be a true collector of important cultural experiences, the experiences can't always be what you would otherwise do. I actually attended half of a Wayne Newton concert, for instance...
In the spirit of cultural-experience-gathering, today Ned and I went to Hooters. Hooters, for those who read the Christian Science Monitor and watch religious cable and so are unaware, is a restaurant chain that started in Florida and is now based in Atlanta. At Hooters the food is secondary to the person who serves it. That crucial serving person is a Hooters Girl, and she is carefully designed to be hot stuff. All Hooters Girls wear orange satin gym shorts of a size more appropriate for a five-year-old, plus tee shirts that say "h O O ters" on them. The word is surrounded by a drawing of an owl, as if "hooters" is not a synonym for breasts, but has to do with the sounds made by an owl, wink wink. Needless to say, these are all very healthy young women.
When Hooters first opened, there was such negative huffing and puffing about the restaurant chain's obvious exploitation of women that to this day the Hooters website (yeah, I've done a little research here) defends the female staff. From the website: "Claims that Hooters exploits attractive women are as ridiculous as saying the NFL exploits men who are big and fast." (But wait! It does!) "Hooters Girls have the same right to use their natural female sex appeal to earn a living as do super models Cindy Crawford and Naomi Campbell." (Isn't that also the argument for the legalization of prostitution?) "To Hooters, the women's rights movement is important because it guarantees women have the right to choose their own careers, be it a Supreme Court Justice or Hooters Girl." I'm sure Ruth Bader Ginsberg would be interested to know that she and Misti and Tammi and Bunni and Brandi are socio-political soul mates.
Anyway, I can honestly say that I would never enter a Hooters unless there was some legitimate reason to do so. I think the places do indeed exploit women and it doesn't make that much difference to me if the women want to be exploited or not. I also have no desire to spend an hour or so over a plate of lousy food feeling like a leering old creep. In essence I reject the Hooters idea because of the way it makes me feel (slightly despicable) more than the way it must make the girls feel to work there. But Hooters is certainly an American cultural experience that for educational reasons is worth having, just like attending a Wayne Newton concert, or a monster truck rally, or listening to Rush Limbaugh just once for as long as you can stand it.
My reason for going to the Hooters on Lake Union today was that a Hooters Girl there may be in a television program I am producing. Her name is Kristin. She is an old friend of Dawnelle, who works in the accounting department of KCTS. When I mentioned to Dawnelle a few days ago that I was looking for a young woman to ride in a car while we filmed a travelogue of Seattle from that car, she suggested her friend. Kristin is apparently eager for the opportunity, but I wanted to meet her personally and tell her about the show. This may be a sexist reaction, but I wanted to make sure Kristin can do something other than serve chicken wings whilst shaking her "thang." Walking and talking at the same time would be a good start. Dawnelle says Kristin is also in cosmetology school, works as a receptionist, and in the evenings delivers eats at another Hooters up north, so she's sort of "torn between two Hooters," in the lyrics of that old country classic. Given that schedule, going for a weekend Hooters lunch was the best way to meet her.
I took Ned along because it was something to do on Saturday, I knew he would find Hooters fascinating for a variety of reasons, and why not? One could argue that it's insensitive to present him with a room full of unobtainable objects, but don't unobtainable objects surround every guy in the place? Though I have no direct experience, I'd guess that the quickest way to go flying teeth first into the street from a Hooters would be to lay hands on a member of the wait staff.
I didn't tell Ned much about the place in advance. I just told him we had to go to this restaurant and meet this girl. If he knew ahead of time the Hooters story, the raison d'étre of Hooters, so to speak....listen, if he knew about the hooters, he might forego telling Kristin about the Denny family in favor of a discussion of her constitutional right to exploit her title charms. That was a chance I didn't care to take.
We walked into Hooters about 1:00. The Hooters Hostess behind the counter just inside the door immediately shouted at us, "Hi-welcome-to-Hooters! Can-I-show-you-to-a-table-for-lunch?" She had to shout because the place was so noisy. A dozen television sets blared sporting events, the play-by-play fighting for dominance with the rock and roll that spewed from speakers on every wall. A Hooters girl could have been having a wrestling match with a bear in there and Ned and I wouldn't have known unless it caught our eye.
There were many Hooters Girls lingering ten yards away, not wrestling bears but just chatting. Weekend lunch is apparently slow time in the land of Hooters. I glanced at Ned while we stood at the counter. Watching the nearby staff, his eyes were as big as Frisbees. I said yes to the Happy Hooters Hostess's invitation to lunch. I said it twice because of the noise, and because her attention was elsewhere. She was looking at Ned like he was leading an alien invasion from Mars. I doubt if many people with disabilities seek out the Hooters experience. It's not the kind of place the Parks Department green vans head for after an afternoon of bowling. When our hostess finally looked back at me, I inquired if a girl named Kristin happened to be on duty at the time.
This was a mistake. I should have waited until we were seated and more accepted within the Hooters milieu. The Hostess's demeanor changed instantly from professional gaiety to cold-eyed suspicion. "Kristin?" she said brusquely. "I don't know anybody named Kristin. There's nobody who works here named Kristin."
I could see where she was coming from. An old guy she's never seen before walks in the door with a young guy with Down syndrome and starts asking about a specific girl. They must get a lot of real creepy people in Hooters. I wouldn't be surprised if the creepy people/normal people ratio at any given time is ten to one, and a hundred to three on weekend evenings. For reasons of security, the management wants its girls thought of generically. One size fits all. Asking for a particular girl at the front desk has a whiff of the Hooters Whores about it, not the ambience you seek in a place that is only selling booze, barbecued chicken wings, and reportedly awful burgers, and emphatically not the staff.
I tried to explain. "I do television programs on Channel Nine," I said, "and Kristin is going to be in one of them."
She still wasn't having any of it. "You do programs on Channel Nine?" barked the lass, staring at me. "You? I watch Channel Nine all the time." I resisted the temptation to answer that I thought she was lying. Somehow I don't see The Newshour and Nova getting that big an audience amongst the Hooters lovelies.
"Yes. Many programs. On Channel Nine. KCTS."
Perhaps she realized that presenting herself as a devotee of public television was a stretch, because she said, "Actually my son watches it a lot. In the mornings. The kid's shows." And then she stared even harder at me, trying to see if I was Mr. Rogers, even though he's dead. Eventually she checked the staff roster and told me she had a Crystal, but no Kristin. I explained how a mutual friend had told me Kristin only worked the weekend lunch. The Hostess went off to ask the nearest girl if she knew Kristin. She came back immediately and said that Kristin had left half an hour before. The Hostess was about three degrees warmer, but it was still mighty frosty around the Hooters front desk.
"Well," I said, grabbing Ned by the arm and pulling him toward the door, "maybe we'll come back earlier next Saturday."
"I can't give you her number," the Hostess yelled after me, as if I'd been dumb enough to ask for it. And we were gone. Walking back to the car I explained to Ned about Hooters, how it was a restaurant chain whose popularity was based almost entirely on the underclad women waitresses. And I told him what hooters really means.
"That's disgusting!" Ned, the lifelong Puritan, said. Pause. "But I liked the waitresses."
We shall never return.Treatment of Children with Down Syndrome and Growth Retardation With Recombinant Human Growth Hormone. Growth, Genetics & Hormones. Abstracts from the Literature. Volume 8, Issue 1, March 1992. URL: http://www.gghjournal.com. Permission granted by Jere Lifshitz, RN, MS, Director of Operations on behalf of Prime Health Consultants and the author, Fima Lifshitz, MD. Short stature is known to be one of the features of Down syndrome (DS). The authors treated 13 children with DS who were short for age (standard deviation score [SDS] -1.19 to -3.5), microcephalic (-1.58 to 6.60 SDS), and had no heart disease. Before treatment, peak serum growth hormone (GH) concentrations were less than 10 µg/L after levodopa and clonidine stimulation tests in 5 patients, after clonidine in 3 patients, and after levodopa in 3 patients. Three patients had nocturnal integrated GH concentrations of 0.5, 1.5, and 0.65 µg/L, respectively. The endocrine findings before treatment were normal with respect to luteinizing hormone, follicle stimulating hormone, estrogen, testosterone, prolactin, thyroid stimulating hormone (TSH), thyroxine, and triiodothyronine.