tag:blogger.com,1999:blog-44113748167408537492024-03-20T22:24:37.595-04:00The DD News BlogNews, information, and commentary for families and friends of people with developmental disabilities.Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.comBlogger868125tag:blogger.com,1999:blog-4411374816740853749.post-65645430934505393542024-03-04T09:32:00.002-05:002024-03-04T09:32:39.732-05:00Measles in Michigan<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMCV7C2_2Mjacp2argRlyt_tRNRHqFbXEs21tJJ0PyQp_UV01FQcaY2wzshh_7-NI8c9ogPUutG_g5CinipcteafhMDsy2CFN11qtWPDv58cSwsCaJlvJ_BTk6Tw_RWB7KufyHTi88rFwa7pnL0TFXZYDfg_u6W3AVLhLPjWqtMyju-QpZ5NV6P0Uc8FQ/s640/16%2001%20troll.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="600" data-original-width="640" height="188" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMCV7C2_2Mjacp2argRlyt_tRNRHqFbXEs21tJJ0PyQp_UV01FQcaY2wzshh_7-NI8c9ogPUutG_g5CinipcteafhMDsy2CFN11qtWPDv58cSwsCaJlvJ_BTk6Tw_RWB7KufyHTi88rFwa7pnL0TFXZYDfg_u6W3AVLhLPjWqtMyju-QpZ5NV6P0Uc8FQ/w200-h188/16%2001%20troll.jpg" width="200" /></a></div><span style="font-family: arial; font-size: medium;">According to an <a href="https://www.freep.com/story/news/local/michigan/2024/03/03/washtenaw-potential-measles-exposure-what-to-know/72830951007/" target="_blank">article</a> from the Detroit Free Press, </span><span style="font-family: arial; font-size: medium;"><span style="font-weight: normal;">"Washtenaw, Wayne county officials recommend vaccination amid potential measles exposures" by Jenna Prestininzi, 3/3/2024, measles has made its way to Washtenaw and Wayne County, Michigan: <br /></span></span><p></p><p><span style="font-size: medium;"><i>"</i><span style="font-family: arial;"><i>Those most at risk include those who are unvaccinated, those who don't know their immunization status, pregnant women and those who have a weakened immune system because of illness and diseases like HIV, malnutrition and/or medications."</i><br /><br /><i>"Common measles symptoms include:<br /> • High fever (may spike to more than 104℉).<br /> • Cough.<br /> • Runny nose.<br /> • Red, watery eyes (conjunctivitis).<br /> • Tiny white spots on the inner cheeks, gums and roof of mouth two to three days after symptoms begin.<br /> • A rash that is red, raised, blotchy; often starts on face, spreads to the trunk, arms and legs three to five days after symptoms begin.</i></span></span></p><p><i><span style="font-size: medium;"><span style="font-family: arial;">Anyone potentially exposed should get vaccinated against measles within 72 hours if not already immune, officials said. The MMR vaccine protects against measles, <b>rumps</b> [sic] and rubella, with two doses considered to provide immunity."</span></span></i></p><p><span style="font-size: medium;"><span style="font-family: arial;">[I left the above typo in because news outlets that rely on spellcheck rather than actual human beings to check for errors deserve the embarrassment. Imagine if that had appeared in a headline - "<i>The MMR vaccine protects against rumps"</i>. Maybe that would increase the vaccination rate?]<br /><br /><i>"Widespread measles vaccination greatly reduces the virus' spread, with one dose about 93% effective and two doses about 97% effective, according to the CDC. In Michigan, vaccine coverage for the measles, mumps, rubella vaccine for children 4 to 6 years old has fallen from 89.4% in 2017 to 84% in 2022. Among children ages 19-35 months old, vaccine coverage has dropped from 84.7% in April 2020 to 83.6% in December 2023, state health officials said."</i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><b>Measles can be serious</b><i> <br /></i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i><a href="https://www.cdc.gov/measles/symptoms/complications.html" target="_blank">From the Centers for Disease Control and Prevention (CDC)</a>:</i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"...Children younger than 5 years of age and adults older than 20 years of
age are more likely to suffer from complications. Common complications
are ear infections and diarrhea. Serious complications include pneumonia
and encephalitis.</span></span><span style="font-size: medium;"><span style="font-family: arial;"><i>"<br /></i></span></span></p><p><u><i><span style="font-size: medium;"><span style="font-family: arial;"> </span></span></i></u><span style="font-size: medium;"><span style="font-family: arial;"><u><i>Common complications: </i></u><br /> • Ear infections occur in about one out of every 10 children with measles.<br /> • Diarrhea is reported in less than one out of 10 people with measles.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><u><i>Severe complications in children and adults</i><br /></u></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Some
people may suffer from severe complications, such as pneumonia
(infection of the lungs) and encephalitis (swelling of the brain). They
may need to be hospitalized and could die.<br /><br /><b>Hospitalization</b>. About 1 in 5 unvaccinated people in the U.S. who get measles is hospitalized.<br /><br /><b>Pneumonia</b>.
As many as 1 out of every 20 children with measles gets pneumonia, the
most common cause of death from measles in young children.<br /><br /><b>Encephalitis</b>.
About 1 child out of every 1,000 who get measles will develop
encephalitis (swelling of the brain) that can lead to convulsions and
can leave the child deaf or with intellectual disability.<br /><br /><b>Death</b>.
Nearly 1 to 3 of every 1,000 children who become infected with measles
will die from respiratory and neurologic complications.<br /><br /><b>Complications
during pregnancy.</b> Measles may cause pregnant women who have not had the
MMR vaccine to give birth prematurely, or have a low-birth-weight baby.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i><u>Long-term complications</u></i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Subacute
sclerosing panencephalitis (SSPE) is a very rare, but fatal disease of
the central nervous system that results from a measles virus infection
acquired earlier in life...</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><b><a href=" https://www.cdc.gov/vaccinesafety/vaccines/mmr-vaccine.html" target="_blank">Vaccine Safety from the CDC</a>:</b> <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The Measles, Mumps,
Rubella (MMR) vaccine is very safe, and it is effective at preventing
measles, mumps, and rubella. Vaccines, like any medicine, can have side
effects. Most people who get MMR vaccine do not have any serious
problems with it. Getting MMR vaccine is much safer than getting
measles, mumps, or rubella.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><u>Common Side Effects of MMR Vaccine</u><br /> • Sore arm from the shot<br /> • Fever<br /> • Mild rash<br />
• Temporary pain and stiffness in the joints, mostly in teenage or
adult women who did not already have immunity to the rubella component
of the vaccine </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">MMR vaccine has been linked with a very small risk of
febrile seizures (seizures or jerking caused by fever). Febrile seizures
following MMR vaccination are rare and are not associated with any
long-term effects. Because the risk of febrile seizures increases as
infants get older, it is recommended that they get vaccinated as soon as
recommended.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Some people may experience swelling in the cheeks or
neck. MMR vaccine rarely causes a temporary low platelet count, which
can cause a bleeding disorder that usually goes away without treatment
and is not life threatening. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Extremely rarely, a person may have a
serious allergic reaction to MMR vaccine. Anyone who has ever had a
life-threatening allergic reaction to the antibiotic neomycin, or any
other component of MMR vaccine, should not get the vaccine.<br /><br /><i><u>On the same CDC page, see Related Scientific Articles</u></i></span></span><br /><span style="font-size: medium;"><span style="font-family: arial;"><br />******************</span></span></p><p><span style="font-size: medium;"><span style="color: #cc0000; font-family: arial;">Deciding to vaccinate or not, seems to me, to be similar to deciding whether to use an antibiotic to treat a bacterial infection. A few people have serious and even life-threatening reactions to certain antibiotics. Weighing the alternative of living with a raging infection against the likelihood of a serious side-effect, most people come down on the side of taking the risk with an antibiotic. Included in weighing that risk is past experience with the medication and allergic reactions that have already been experienced. <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"> </span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-15928212042419257462024-02-03T19:18:00.005-05:002024-02-03T19:21:31.729-05:00Michigan's Children's Special Health Care Services expands health care for adults<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_rvUnLTUyLuwJVJAsyrittN-H3VlNKc60FmTzo-RVh5jli2PEBIKmydeFJpGTyXLnvObr8lsy8mY5uTXRYoCuFCVPpXFW3ghNoYdrNiZipceqZJ0EDk13VNvw228KhEH2tF-RpTQuEuyvnFPf_RCoLMcHjVHDkFlE1wLNl9Mjanr06fYcAS99CnMHjc/s640/15%2002%20Snowy%20Blue.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="426" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhY_rvUnLTUyLuwJVJAsyrittN-H3VlNKc60FmTzo-RVh5jli2PEBIKmydeFJpGTyXLnvObr8lsy8mY5uTXRYoCuFCVPpXFW3ghNoYdrNiZipceqZJ0EDk13VNvw228KhEH2tF-RpTQuEuyvnFPf_RCoLMcHjVHDkFlE1wLNl9Mjanr06fYcAS99CnMHjc/w133-h200/15%2002%20Snowy%20Blue.jpg" width="133" /></a></div><span style="font-family: arial;"><span style="font-size: medium;"><i>This is from the Michigan Department of Health and Human Services:</i><br /></span></span><p><span style="font-family: arial;"><span style="font-size: medium;">FOR IMMEDIATE RELEASE: Feb. 2, 2024</span></span><br /><span style="font-family: arial;"><span style="font-size: medium;">CONTACT: Lynn Sutfin, 517-241-2112, SutfinL1@michigan.gov<br />MDHHS <b><a href="https://content.govdelivery.com/attachments/MIDHHS/2024/02/02/file_attachments/2770368/CSHCS%20expansion%20NR.pdf" target="_blank">Children’s Special Health Care Services expands</a> to cover young adults until age 26<br /></b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">LANSING, Mich. – Young adults with special health care needs in Michigan will have increased access to care thanks to the expansion of the Michigan Department of Health and Human Services (MDHHS) Children’s Special Health Care Services (CSHCS) program.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Through a FY24 budget recommendation by Gov. Gretchen Whitmer that was approved by the Michigan Legislature, <u>coverage was extended from age 21 to age 26.</u> This expansion is expected to provide coverage to an additional 9,000 individuals. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">MDHHS began processing enrollments for this newly eligible population last month.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“Governor Whitmer continues to focus on improving public health and investments to make Michigan communities healthier,” said MDHHS Director Elizabeth Hertel. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“<b>Expansion of Children’s Special Health Care Services will provide access to needed health services and specialty care for young adults with chronic or complex health conditions as they are more likely to have challenges accessing care.</b>”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Children’s Special Health Care Services is a program that assists families with a child or young adult with a chronic or complex medical condition. It covers more than 2,700 physical conditions. In addition, it provides coverage to clients regardless of age with cystic fibrosis, hemophilia or sickle cell disease. In Michigan, more than 40,000 individuals, primarily children, are enrolled in the program.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“On behalf of Michigan’s epilepsy community, we are excited and grateful to see extended coverage of the Children’s Special Health Care Services program to age 26,” said Brianna Romines, Epilepsy Foundation of Michigan president. “Many youth with epilepsy receive coverage through this program and while this program previously ended at 21, managing their epilepsy and seizures continues on. We know that by extending this program, more youth with epilepsy and many other chronic medical conditions will have access to the comprehensive care needed to best manage their condition and live their best life.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">MDHHS encourages young adults with special health care needs to apply for coverage by contacting their local health department for assistance. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“The Children’s Special Health Care Services Detroit Local Health Department Office is excited and thrilled with the expansion of coverage for individuals with eligible chronic medical conditions up to the age of 26,” said Crystal Hepburn, BSN, RN, CCM, Children's Special Health Care Services program manager, Detroit Health Department. “This expansion continues to assist our program in addressing the health disparities within our community. Having equitable, accessible health care for our clients aids in the appropriate management of their diagnosis and affects the quality of life, increasing the opportunities for positive health outcomes. By increasing access to care and coverage, it decreases the financial stress and burden for clients in managing their chronic medical condition. We are delighted that our families will continue to have the wonderful support that they have come to know within our local health department until their family member reaches age 26.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">For more information on Children’s Special Health Care Services or the enrollment process, individuals should contact their local health department, the Children’s Special Health Care Services Family Phone Line at 800-359-3722 or on the MDHHS website.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">***************** </span><br /></span></p><p><a href="https://www.michigan.gov/mdhhs/assistance-programs/cshcs/general-information-for-families-about-cshcs?utm_campaign=&utm_medium=email&utm_source=govdelivery" style="font-family: arial;" target="_blank"><span style="font-size: medium;">General information about CSHCS</span></a><br /></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-3647617499670270182024-01-21T09:55:00.008-05:002024-01-21T09:58:08.868-05:00 Michigan primary election: February 27, 2024<p><span style="font-family: arial;"><span style="font-size: medium;"><a href=" https://mvic.sos.state.mi.us/" target="_blank"></a></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDHuiNiR4GyTgLBlN8MZEYzpxMzI1vjsCdJsDlnyi9hhbhyphenhyphenHIbSM-O5Z96FmhH7ZmDYxpVqiC8ACeySSH9Wtr677jr79sSZKQE_iz4HVaAlQgALMK0Uo4tOkVd9pboYIIT09ZBv-SKzwA1-O7eYU7BiXXPcx9zFoIy48lkHZiWxme6fcZ1zkVrRYfu6FY/s4032/23%2010%2021%20ann%20arbor.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="4032" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDHuiNiR4GyTgLBlN8MZEYzpxMzI1vjsCdJsDlnyi9hhbhyphenhyphenHIbSM-O5Z96FmhH7ZmDYxpVqiC8ACeySSH9Wtr677jr79sSZKQE_iz4HVaAlQgALMK0Uo4tOkVd9pboYIIT09ZBv-SKzwA1-O7eYU7BiXXPcx9zFoIy48lkHZiWxme6fcZ1zkVrRYfu6FY/w200-h150/23%2010%2021%20ann%20arbor.jpeg" width="200" /></a></span></span></div><p><span style="font-family: arial;"><span style="font-size: medium;"><i>January 21, 2024 <br /></i></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Voter information is available on the MI <a href="https://mvic.sos.state.mi.us/" target="_blank">Secretary of State Website</a>. The Republican primary election is more contested this year than the Democratic primary and a bit more complicated. You can read about that <a href="https://www.freep.com/story/news/politics/elections/2024/01/17/what-to-know-about-michigans-feb-27-presidential-primary/72240663007/" target="_blank">here</a>.<br /><br /><b>Register to vote:</b> You can register to vote on-line up to 14 days before the election. After that, for this election, you can register in person up until and on Election Day at your city or township clerk’s office. Michigan does not register voters by party affiliation. When you vote in a primary election, you need to pick a ballot for one party with the names of candidates running on that party’s ticket. <br /><br /><b>To be eligible to register to vote you must be</b>:</span></span></p><p></p><p><span style="font-family: arial;"><span style="font-size: medium;"> • A Michigan resident (at the time you register) and a resident of your city or township for at least 30 days (when you vote)<br /> • A United States citizen<br /> • At least 18 years of age (when you vote)<br /> • Not currently serving a sentence in jail or prison<br /><br /><b>Proof of residency:</b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">You must show proof of where you live. Documents must have your name and current address. You can show a digital copy of documents. Acceptable documents include:<br /> • Michigan driver’s license or state ID<br /> • Current utility bill<br /> • Bank statement<br /> • Paycheck or government check<br /> • Other government document<br /><br /><b>Absentee Voting:</b> <br /><br /><u><i>From the SOS Website</i>:</u> “All registered voters in Michigan can now vote using what’s called an absentee ballot. You don’t need an excuse or a reason. You can vote by absentee ballot through the mail, without leaving your home. You can also go to your city or township clerk’s office or drop box to return your absentee ballot, which we recommend if you are returning a ballot within two weeks of election day, in order to avoid possible postal delays.”<br /><br /><a href="https://www.freep.com/story/news/politics/elections/2024/01/17/what-to-know-about-michigans-feb-27-presidential-primary/72240663007/" target="_blank"><i>From the Detroit Free Press</i></a>, “Michigan presidential primary 2024: Election Day date, how to vote, candidates” by Arpan Lobo, 1/17/24:</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><b>...Key dates, deadlines for Michigan presidential primary</b><br /><br />While the primary day itself is Tuesday, Feb. 27, Michigan also has early voting and absentee voting. Here are some key dates to know for the presidential primary:<br /> • Sunday, Jan. 28: Communities may begin allowing early voting. Michigan election law requires communities to hold at least nine days of early in-person voting, but communities can choose to hold up to 29 days of early voting. To find out your community's early voting schedule, contact your local clerk's office, which can be found online at the Michigan Voter Information Center at michigan.gov/vote.<br /> • Monday, Feb. 12: Deadline to register to vote online or by mail and be eligible to vote in the Tuesday, Feb. 27, presidential primary.<br /> • Tuesday, Feb. 13: On this day and afterward, people registering to vote in the presidential primary must do so in person at a local clerk's office with proof of residency.<br /> • Saturday, Feb. 17: Communities must begin allowing early voting.<br /> • Friday, Feb. 23, at 5 p.m.: Deadline to request an absentee ballot online or through the mail.<br /> • Sunday, Feb. 25: Last day of early voting.<br /> • Monday, Feb. 26, at 4 p.m.: Deadline to request an absentee ballot in person at a local clerk's office.<br /> • Tuesday, Feb. 27, from 7 a.m. to 8 p.m.: Election Day! Polls are open. Voters can also obtain absentee ballots at their local clerk's office until polls close, but only if they are registering to vote or updating their voter registration address.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">***************************</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">More information is available on the <a href="https://mvic.sos.state.mi.us/" target="_blank">MI Secretary of State Website</a></span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-48443220112362078832024-01-21T08:36:00.002-05:002024-01-21T10:00:46.482-05:00Michigan: Governor Whitmer proposes $5,000 tax credit for caregivers<p></p><span style="font-size: medium;"><span style="font-family: arial;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiERYCYq5XXrEchu9IJInNlGm_EC9OBTtYM2q9nosFYiS4R2c-NelbYNCOsB4Oh1NmA5-Lu05VS69GRkeQfM0YoYZ1iytDNWAE0VzT6XNWMvOBrQd_s62lvy2WUrR2RlgpBR307PX5byruNfNSdThlHMs9EyS2V5Yuoj2u-QfaAFQJ4P6O09XqUZxDEQd4/s640/15%2002%20snowy%20road.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="426" data-original-width="640" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiERYCYq5XXrEchu9IJInNlGm_EC9OBTtYM2q9nosFYiS4R2c-NelbYNCOsB4Oh1NmA5-Lu05VS69GRkeQfM0YoYZ1iytDNWAE0VzT6XNWMvOBrQd_s62lvy2WUrR2RlgpBR307PX5byruNfNSdThlHMs9EyS2V5Yuoj2u-QfaAFQJ4P6O09XqUZxDEQd4/w200-h133/15%2002%20snowy%20road.jpg" width="200" /></a></div>The Detroit Free Press reported today on a proposal by Governor Whitmer to provide tax relief to caregivers. </span></span><p></p><p><span style="font-size: medium;"><span style="font-family: arial;">According to the article, “<a href="https://www.freep.com/story/news/politics/2024/01/21/michigan-caregiver-tax-credit-gretchen-whitmer/72282479007/" target="_blank">Whitmer's Michigan caregiver tax credit proposal could provide up to $5,000 in tax relief</a>” by Clara Hendrickson, 1/21/24, the plan would “provide up to $5,000 in tax relief for thousands of Michigan families, covering expenses such as counseling, transportation and nursing or respite services. Whitmer's office said the proposal will allow more seniors in Michigan to age where they live and help parents caring for children with long-term needs.” <br /><br />According to a <a href="https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf " target="_blank">2021 AARP study</a> “…unpaid family caregivers spend an average of $7,242 annually. The advocacy group places the economic value of their contributions supporting the adults in their lives at an estimated $600 billion.”</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The “Caring for MI Family Tax Credit" would cover expenses such as counseling, transportation and nursing or respite services to alleviate financial stress on families caring for seniors and parents caring for children with long-term needs.</span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-1140933899469002172024-01-16T11:36:00.011-05:002024-01-16T11:40:17.007-05:00What's old is new again: Regulating community services for people with disabilities: a promise fulfilled or a barrier to appropriate services? <p><span style="font-size: medium;"><span style="font-family: arial;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><span style="font-family: arial;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp18SJwvgkMhrQF7Vlz6bZ5Q0tEYsWzZjBBwQB6OVpOsfUDRV1RoC3hvzRQazLMQotuodG5wwKEQIUV6u7kbupy9ST4BWFvxitip-8AFBES8pEGR3vcB7J9V7Wu9mOFKQuSJrL9UTZmJEOXT48boV2XaJow2ZUMQ5l_AtF4DuUCFe6KFTl2XXYW-6tFRc/s1280/18%2003%20snow.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="960" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp18SJwvgkMhrQF7Vlz6bZ5Q0tEYsWzZjBBwQB6OVpOsfUDRV1RoC3hvzRQazLMQotuodG5wwKEQIUV6u7kbupy9ST4BWFvxitip-8AFBES8pEGR3vcB7J9V7Wu9mOFKQuSJrL9UTZmJEOXT48boV2XaJow2ZUMQ5l_AtF4DuUCFe6KFTl2XXYW-6tFRc/w150-h200/18%2003%20snow.jpg" width="150" /></a></span></span></div><span style="font-size: medium;"><span style="font-family: arial;">This is a post from The DD News Blog for August 12, 2018. Not much has changed since then, with the exception of a worldwide pandemic that killed over a million people in the US and revealed serious inadequacies in the country's healthcare system. It also shined a light on the heroics of healthcare workers on the front lines of the pandemic, who, at first had the admiration and respect of the public. Later, they suffered abuse from the misdirected anger of a portion of the public stirred up by conspiracy theories about the virus and vaccines. The system of care for people with I/DD and their families also suffered with programs closing, some temporarily, but others permanently. Severe work shortages, especially among direct service professionals, hampered an already distressed system, seemingly on the verge of collapse. We seem to be back, but not quite, to where we were when the whole thing began. </span></span><p></p><p><span style="font-size: medium;"><span style="font-family: arial;">This is a good place to start, heading into a new year with the same old controversies that must be resolved if we are going to rebuild a fair system that includes recognition of the full range of people served and the diversity of needs.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">********************************* <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"></span></span><span style="font-family: arial;"><span style="font-size: medium;"><a href="https://theddnewsblog.blogspot.com/2018/08/pitfalls-of-attempts-to-regulate.html" target="_blank">Sunday, August 12, 2018</a><br /><br />In 2014, the federal Centers for Medicare and Medicaid Services issued “the Settings Rule” as an attempt to regulate how and where Medicaid-funded Home and Community-Based Services (HCBS) are provided in community settings to people with disabilities. Although the settings rule is promoted as a policy of liberation to bring about “true” integration and inclusion of people with disabilities in community settings, the corollary to that is the assertion that the rule will free up funding to be redistributed, first by closing programs that some advocates argue no one wants or needs, and then to pay for services that the same advocates claim are "truly" inclusive.<br /><br />Many I/DD advocacy groups, most notably those receiving federal funding under the federal <a href="https://theddnewsblog.blogspot.com/search?q=developmental+disabilities+act" target="_blank">Developmental Disabilities Act</a>, oppose all “congregate” programs that serve more than 3 or 4 people with intellectual and developmental disabilities (I/DD) together. Rather than emphasizing the individual right to appropriate services and the requirement that “a public entity shall administer services, programs, and activities in the most integrated setting <i><u>appropriate to the needs of qualified individuals with disabilities</u></i>…” [emphasis added], many advocates promoting the Settings Rule have focused mostly on closing programs, thereby eliminating them as a choice for those who still want and need them. <br /><br />To what extent is implementation of the Settings Rule improving the lives of people with I/DD? Or is it just an excuse to reduce or eliminate programs for people with the highest support needs in hopes that others can benefit from the redistribution of precious Medicaid dollars? Is it realistic to expect that the supposed cost-savings will pay for more and better services in the community? From the perspective of people with I/DD and their families who are losing programs they have relied on for years, the Settings Rule is seen as an excuse to de-fund needed services. <br /><br />Judging from the promises made over many decades from advocates and government agencies, that closing institutions would pay for more and better services in the community, it is highly doubtful that removing people from institutions (or from settings that are too "institutional in nature” under the Settings Rule) will generate significant savings to pay for adequate services for everyone else. <br /><br />As advocates and government agencies pursue their dream of closing all institutions, as well as eliminating specialized group settings for people with disabilities, they avoid the obvious question of how much more money must be put into the system to meet the needs of people with I/DD and where will it come from? It means confronting politically unpopular ideas, at least unpopular with most current elected officials, such as boosting Medicaid funding to pay for more and better services. Efforts to stabilize the workforce of direct service providers by providing them with a living wage and better working conditions and linking the funding of services with needs established by well-written individual service plans could improve both the quality of services and accountability to people with disabilities and to taxpayers.<br /><br />This dilemma - justifying program closures with promises of future savings to pay for community services - was recognized by a fervent proponent of deinstitutionalization Sam Bagenstos, a former Principal Deputy Assistant Attorney General in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases. </span></span> <span style="font-family: arial;"><span style="font-size: medium;">[He currently serves as general counsel of the US Department of Health and Human Services and is on leave from the University of Michigan Law School]</span></span><span style="font-size: medium;"> </span><span style="font-family: arial;"><span style="font-size: medium;">In a <a href="https://repository.law.umich.edu/cgi/viewcontent.cgi?article=1156&context=law_econ_current" target="_blank">2010 Cardozo Law Review article</a>, “The Past and Future of Deinstitutionalization Litigation”, Bagenstos admits that closing institutions has not resulted in sufficient services in the community to allow people with psychiatric and intellectual and developmental disabilities to flourish. <br /><br />This is an excerpt from a 2013 article from VOR , “<a href="https://vor.net/images/BagenstosResponseFinal.pdf" target="_blank">Will it be different this time?</a> Deinstitutionalization’s Past: A Reason to Pause and Reconsider”:<br /><br /><span style="color: #cc0000;">First, Bagenstos argues that one measure of the success of deinstitutionalization is the sheer numbers of people with I/DD who have been deinstitutionalized and the numbers of institutions that have been closed since 1967: <br /><br />"[D]einstitutionalization advocates have essentially won the old battles for the closing and downsizing of large state institutions for people with psychiatric and developmental disabilities . . . the population of state institutions now stands at approximately 16% of its peak, the population of state and local psychiatric hospitals stands at approximately 9% of its peak, and these numbers continue to decrease."<br /><br />Bagenstos goes on to admit, however, that the political alliance between deinstitutionalization advocates and fiscal conservatives meant certain failure for the advocates’ second goal, “to develop an array of services and supports in the community to enable people with psychiatric disabilities or intellectual/developmental disabilities to flourish.” <br /><br />It should not be surprising that the coalition of deinstitutionalization advocates and fiscal conservatives largely achieved their goal of closing and downsizing institutions and that deinstitutionalization advocates were less successful in achieving their goal of developing community services.<br /><br />Even if some deinstitutionalization advocates were initially unaware that they had entered into a “devil’s bargain” with fiscal conservatives, unconscionably, closure efforts continued even after it became apparent that widespread tragedies were befalling fragile individuals with I/DD developmental disabilities in inadequate community settings.</span> <br /><br />Supporters of the HCBS Settings Rule seem to be making their promises of improved services and better lives for people with disabilities contingent on the idea that savings from the closure and elimination of specialized congregate (group) settings in the community will result in the redistribution of funds. It is politically easier for advocates to call for the closure of programs that do not meet their criteria of “true” integration and inclusion than to confront the reality that the community system of care for people with I/DD is underfunded and to a large extent broken. Many of the organizations promoting their interpretation of the Settings Rule also get a significant amount of funding from government agencies that fund programs under the DD Act. They know better than to bite the hand that feeds them by advocating for politically difficult but necessary solutions to the crisis in community care.<br /><br />*************************<br /><br /><i>See also, <br /><br />“<a href="https://vor.net/images/BagenstosResponseFinal.pdf" target="_blank">Will it be different this time? Deinstitutionalization’s Past</a>: A Reason to Pause and Reconsider” from VOR, 2013, including footnotes and references.<br /><br />"<a href="https://theddnewsblog.blogspot.com/2016/04/what-does-ada-integration-mandate.html" target="_blank">What does the ADA Integration Mandate really mean?</a>", The DD Newsblog, 4/10/16<br /><br />Samuel R. Bagenstos, <a href="https://repository.law.umich.edu/cgi/viewcontent.cgi?article=1156&context=law_econ_current" target="_blank">The Past and Future of Deinstitutionalization Litigation</a>, 34 Cardoza L. Rev. 1 (2012)</i><br /></span><br /></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-70509007652516214692024-01-12T17:45:00.000-05:002024-01-12T17:45:03.998-05:00Ian Barker Is thirty-nine!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxVvrqRXdRIBveIKD0-UVFIQdvxt5NiA6lERi-iKG34JDC-FlOY3H7n6Axl3bDF5RKdonXi-FuuNCmwZaInPUQD91rEuiuKq3ZwgKg40-IIiQdS6-0OQVs068y7vtPc-wDIf8oYgqCB-7L6EVpaDvbddRmJKd9CdiGl9RSpEr1RSny6Uwb65f8J0kVkxE/s3088/IMG_4846.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="3088" data-original-width="2316" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxVvrqRXdRIBveIKD0-UVFIQdvxt5NiA6lERi-iKG34JDC-FlOY3H7n6Axl3bDF5RKdonXi-FuuNCmwZaInPUQD91rEuiuKq3ZwgKg40-IIiQdS6-0OQVs068y7vtPc-wDIf8oYgqCB-7L6EVpaDvbddRmJKd9CdiGl9RSpEr1RSny6Uwb65f8J0kVkxE/w150-h200/IMG_4846.jpeg" width="150" /></a></div><span style="font-size: medium;"><span style="font-family: arial;">Happy Birthday, Ian! </span></span><br /><p><span style="font-size: medium;"><span style="font-family: arial;">When Ian was born, he was smaller than a five-pound bag of sugar, but better looking. He spent six weeks in the Stanford Hospital Neonatal Intensive Care Unit (the NICU), with a nasty alpha strep infection acquired in utero, an extremely rare event. Some poor intern or medical student was assigned the job of finding out exactly how rare this is - most cases of alpha strep infection in newborns are acquired during a vaginal birth, but he was born by C-section. The student, without the benefit of our modern search engines, came up with about 30 similar cases. <br /><br />During his first few days of life, Ian endured something like toxic shock syndrome that develops very quickly into low blood pressure and multiple organ failure. We were given dire predictions of how poorly he would do. We brought our one-in-more-than-a-million infant with dire predictions home to meet his brother Danny who was eight years old. Danny had already manifested many of the dire predictions from his precarious birth that resulted in brain damage from seizures.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Oh well.<br /><br />I don’t want to disappoint those looking for a feel-good story of beating the odds with a child who defiantly exceeded all expectations, but unfortunately that is not what happened. Ian has very severe cerebral palsy and intellectual disabilities. Fortunately, he learned to smile and laugh early. He is sweet and good-natured about all this and still good looking. </span></span><span style="font-size: medium;"><span style="font-family: arial;">He has honed his survival skills, endearing himself to the people around him to get the attention he needs. </span></span><span style="font-size: medium;"><span style="font-family: arial;">He loves the ladies (and men, but especially the ladies) who take care of him. We see him often. Since he does not talk, we have not figured out if he is laughing <i>with</i> us or <i>at</i> us, after all these years. </span></span><br /></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com2tag:blogger.com,1999:blog-4411374816740853749.post-21778013738126745562023-12-05T13:51:00.001-05:002023-12-05T13:54:08.336-05:00Tackling gun violence in Detroit: preventing disabilities and making everyone safer<p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1Jg-4sZG0TOhrrNIyuT2-O8Iu2FLd0-WCLZkrbQNbXBJ7xZqw1spF1aThJhDTbXi3Nvkn4pMmoYVyAUcXQiXvKMGWLWQYyGyLepIMaWau7cu0ST6EZeDLV5BrazYafO68yrp3Dv1-54iSmyiB_aE1_t0YpCKlNrb2oMToSdZMLY-OBmFdXM80T5PVAIw/s3320/23%2010%2025%20turkey%20tail%20fungus.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2461" data-original-width="3320" height="148" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1Jg-4sZG0TOhrrNIyuT2-O8Iu2FLd0-WCLZkrbQNbXBJ7xZqw1spF1aThJhDTbXi3Nvkn4pMmoYVyAUcXQiXvKMGWLWQYyGyLepIMaWau7cu0ST6EZeDLV5BrazYafO68yrp3Dv1-54iSmyiB_aE1_t0YpCKlNrb2oMToSdZMLY-OBmFdXM80T5PVAIw/w200-h148/23%2010%2025%20turkey%20tail%20fungus.jpeg" width="200" /></a></span></div><span style="font-size: medium;">Gun violence is usually covered in terms of deaths and numbers of mass shootings. The survivors of gun violence often become part of the disability community - </span><span style="font-family: arial;"><span style="font-size: medium;">when a victim is not
killed by an AK-15, for instance, his or her survival, often with grave
injuries, may lead eventually to lifelong disabilities and trauma-induced mental
distress. The prevention of gun violence should be a concern of disability advocates. </span></span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">The Washington Post published an article last November, “<a href="https://www.washingtonpost.com/nation/interactive/2023/ar-15-force-mass-shootings/?itid=hp-top-table-main_p001_f003" target="_blank">Terror on Repeat: A rare look at the devastation caused by AR-15 shootings</a>” by Silvia Foster-Frau, N. Kirkpatrick, and Arelis R. Hernandez, 11/16/23. The article is disturbing and nauseating in its description of what happens to bodies, classrooms, movie theaters, music festivals, and places of worship after a mass shooting event with this popular military style weapon. It is enough to make one re-consider the extent to which the 2nd amendment applies to the "right" to own weapons of mass destruction. If you are already convinced that there are limits to 2nd amendment rights, feel free to skip this article. <br /><br />There is some good news and progress to report in Detroit where there has been a concerted and coordinated effort to reduce the number of homicides in the city:<br /><br />“<a href="https://www.freep.com/story/news/local/michigan/detroit/2023/12/04/detroit-homicides-guns/71801589007/" target="_blank">Detroit is close to recording its fewest homicides in nearly 60 years</a>” by Andrea May Sahouri, 12/4/23.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">According to the article, “As of Nov. 30, the city had recorded 228 homicides this year, an 18% drop compared to the 276 homicides during the same time last year. In 2018, Detroit recorded 261 homicides, the city's fewest since 1966, a year prior to the Detroit riot in 1967.” Also of note is that the population of Detroit has fallen from 1.58 million people in 1966 to an estimated 620,376 in 2022, but the downward trend in homicides is nevertheless good news for the citizens of Detroit.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">A coordinated effort led by Wayne County Executive Warren Evans targeted seven key areas: “Reducing felony gun case backlogs in Wayne County Circuit and 36th District courts; increasing staffing for the Wayne County Prosecutor's and Sheriff's offices, as well as the Detroit Police Department; increasing coordination between the Wayne County prosecutor and DPD on shooting and homicide cases; increasing accountability for defendants released on tether to the Wayne County Sheriff's Office; increasing accountability from the Michigan Department of Corrections for those on probation and parole; and the implementation of the FAST unit, a joint fugitive apprehension unit of DPD and the Sheriff's Office, which apprehended nearly 1,000 individuals with outstanding felony warrants this year, prioritizing those wanted for gun crimes.” <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The emphasis on reducing gun violence appears to be key to the success of this effort. Another key factor was in reducing the backlog of gun cases pending in the courts: “Felony gun cases pending trial in Wayne County Circuit Court have decreased from 4,000 in January 2022 to 1,330 in November 23, a 67% reduction, according to the coalition.”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">When others have nothing but discouraging words for solving our gun violence epidemic, Kym Worthy, the Wayne County prosecutor is hopeful: “This collaboration is unique in that issues are identified, solutions discussed, and these solutions are implemented. It is not just talk, talk, talk.”</span></span><br /></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-77255800699109722022023-11-27T11:22:00.001-05:002023-11-27T11:22:22.389-05:00NIH proposes to eliminate "reducing disability" from its Mission. The National Council on Severe Autism asks WHY?<p><span style="font-family: arial;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYQM1FMjYllI-y2xAzygPbmWOXKsLjt598WQ9afw-IPMyY_mpY0QIi0ck47wEOHZX5L3CzHfvU6eyrsESJSyFIWTkchPYjcCzXD43w-HYmzE3RYD1NSwfLiMLby7XmsvIFinQtuERRQWPgvaKMafEWUBYrkRNOMT5IYOK-62L803gF2TGVAjTGUOA0fC0/s4032/22%2009%20sassafras.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYQM1FMjYllI-y2xAzygPbmWOXKsLjt598WQ9afw-IPMyY_mpY0QIi0ck47wEOHZX5L3CzHfvU6eyrsESJSyFIWTkchPYjcCzXD43w-HYmzE3RYD1NSwfLiMLby7XmsvIFinQtuERRQWPgvaKMafEWUBYrkRNOMT5IYOK-62L803gF2TGVAjTGUOA0fC0/w150-h200/22%2009%20sassafras.jpeg" width="150" /></a></div>In August of 2023, the NIH (National Institutes of Health) released a <i><b>Request for Information (RFI): Inviting Comments and Suggestions on Updating the NIH Mission Statement.</b></i> <p></p><p><span style="font-size: medium;"><span style="font-family: arial;">The proposal to remove the phrase "reducing disability" from the NIH mission came out of a <a href="https://acd.od.nih.gov/documents/presentations/12092022_WGD_Disabilities_Subgroup_Report.pdf" target="_blank">66-page report</a> from the NIH <b>Advisory Committee to the Director (ACD) Working Group on Diversity, Subgroup on Individuals with Disabilities</b>
which I have only glanced at, but hope to read more thoroughly. It
appears there are many issues regarding the inclusion of people with
disabilities in the medical workforce and reducing discrimination that are uncontroversial, but this is
not one of them. Here is the reasoning behind the proposal: </span></span></p><p style="margin-left: 40px; text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;"><i>“One immediate action for the NIH to support disability inclusion is to remove the language of ‘reducing disability’ from the NIH mission statement. The current mission statement could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed’.”</i></span></span></p><p style="text-align: left;"><span style="font-family: arial; font-size: medium;">Here are the comments from NCSA to NIH. The period for accepting comments closed on November 24, 2023, but I'm sure that will not end the controversy.</span></p><p style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;">*******************************</span></span><br /></p><p><span style="font-family: arial;"></span><span style="font-family: arial;"><span style="font-size: medium;"><i>From the <a href="https://www.ncsautism.org/blog//the-nih-proposes-to-erase-reducing-disability-from-its-mission-statement-ncsa-is-incredulous" target="_blank">NCSA Blog</a>:</i><br /></span></span> </p><p><span style="font-family: arial;"><span style="font-size: medium;"><b><u>The NIH Proposes Erasing "Reducing Disability" From Its Mission. NCSA Is Incredulous</u></b><br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">October 24, 2023<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">To the shock of many, the National Institutes of Health (NIH) has proposed eliminating the goal of reducing disability from its mission. This came about based on a recommendation of a DEI Workgroup on disability concerned that this goal was “ableist.”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">In response to the NIH request for public comment on the proposal, NCSA has submitted the following via email and in shortened form on the submission website. We encourage other organizations and individuals to submit comments as well. The deadline is November 24, 2023.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">National Council on Severe Autism</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">PO Box 26853 <br /><br />San Jose, CA 95159</span></span></p><span style="font-family: arial;"><span style="font-size: medium;">Office of the Director<br />National Institutes of Health<br />Via NIH submission website <a href="https://rfi.grants.nih.gov/?s=64caaa8bb1112e46ad0a1d52">submission website</a><br /><br /><b>Re: Opposition to Proposal to Eliminate "Reducing Disability" from NIH Mission Statement, Notice Number: NOT-OD-23-163</b></span></span><p><span style="font-family: arial;"><span style="font-size: medium;">To the Office of the Director: <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">We have read the National Institute of Health’s (NIH) proposal to erase the goal of “reducing disability” from its mission.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The ostensible purpose of this proposal is promotion of diversity, equity and inclusion (DEI) goals, specifically to “support disability inclusion” at the NIH. The internal report on which this idea is based, Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities Report, December 1, 2022, asserts that the current mission statement “could be interpreted as perpetuating ableist beliefs that disabled people are flawed and need to be ‘fixed.’”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">This argument rests on a clear logical fallacy: it conflates “disability” with “individuals who have disabilities.”<b> Disability itself is not a neutral state of identity; by its very nature it means impairment, dysfunction, and incapacity. This fact is mutually exclusive from the other fact at hand: individuals with disabilities have value and should not be stigmatized. [emphasis added]<br /></b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">It should go without saying that the goal of reducing disability, i.e., impairment, on both a population and individual level is a moral and pragmatic imperative that does not carry any animus toward individual people whose functioning is limited by their disabilities. Our collective desire to eradicate polio hardly demeans those individuals who have fallen victim to polio-caused paralysis. Our aim to reduce fetal alcohol spectrum disorder, and all the disability it can entail, does not mean we believe those affected are morally flawed, or flawed in the sense of any abstract philosophies. Wanting to reduce these and countless other impairments that reduce functioning and human potential — multiple sclerosis, ALS, schizophrenia, the list is long — hardly equates to “ableism.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">When an obstetrician unwraps an umbilical cord choking a neonate, and therefore reducing the risk of lifelong impairment, is she engaging in ableism, or rather the most honorable sort of humanity? By any reasonable standard, disability should be prevented whenever possible. Laws mandating helmets and seat belts are not “ableist”; they protect the public from preventable injury and consequent disability and all the costs, burdens, pains and dependencies that result. When a pregnant woman takes folic acid supplements to reduce risk of spina bifida in her child, she is not “ableist,” she is obviously taking prudent preventive measures to reduce the risk of serious impairment in her child. Countless public health campaigns and NIH efforts shine a light on the risks of smoking, to reduce the prevalence of disabling conditions such as emphysema and COPD. Was it ableist for the FDA to have banned thalidomide?<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The NIH-Wide Strategic Plan makes it clear that a paramount goal of NIH efforts is “to support innovative research ultimately aimed at protecting and improving human health.” The word health of course encompasses reduced risks and impacts of disability.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">While disability is often difficult to “fix,” to borrow language of the report, the vast majority of people with disabilities would have preferred their disabilities be prevented, and if not prevented, then at least alleviated. Perhaps there are people who do not wish to have their disabilities reduced. For example, some deaf people may not wish to hear; some who are blind may not wish to see; some with paraplegia may not wish to walk. But this would be the 1%, not the 99%. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Some might argue that the mission statement’s remaining phrase “prevent or reduce illness” would encompass disabling conditions but of course that is not true. For example, autism is not an illness, it is a developmental disorder rooted in abnormal early brain development that causes significant functional disability in the vast majority of cases. Due to unknown causes, this serious mental disorder now affects about 3% of U.S. children, portending catastrophic long-term consequences for our polity. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">While the need to reduce autism rates has never been more urgent, the new mission statement would not-so-subtly remove any mission to reduce autism, either on an individual or population level. Who would pay the price for this erasure of mission? Americans who count on the NIH to spearhead efforts to identify causes, and also treatments to reduce its disabling impacts, which can include failure to achieve basic communication or living skills, aggression, self-injury, elopement, ingestion of inedible objects, property destruction, and of course lifelong dependency. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">With this proposal the NIH threatens to jump into a foreign moral universe detached from its core duties and in conflict with its congressional mandates and the urgent needs and desires of American citizens and taxpayers. We oppose it in the strongest terms possible.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Thank you for your consideration of our comments.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Very truly yours,<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Jill Escher /President<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">1. While the word ‘ableism’ does not have a concrete meaning in general parlance, the report defines “ableism” as “the belief that people with disabilities are flawed and less valuable than nondisabled people.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">2. Under the Americans with Disabilities Act, for example, a person with a disability is defined as a person who has a physical or mental impairment that substantially limits one or more major life activity. </span><br /></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-70191494850188292712023-11-13T11:15:00.000-05:002023-11-13T11:15:14.263-05:00VOR Comments on proposed rules on Discrimination in Section 504 of Rehabilitation Act of 1973 <p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqiPqka5fGfBusgrXM1aryHtV3h1xnx4qXNqlSYUCAQejfqXNBlz8MC0vIMtoMDSwgh3WwWgw_l9g56lQDYafHdWCPHFsbj8IaZb8zKtWkv-F67LRCN8unCsQhBxC_AFuFZGpM7LL16q8O4RD96Rhyi8aufNK3XDJROFZHnxj1SLc7nal7qkg01vc_xic/s640/Gourds%20at%20farmer's%20market.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqiPqka5fGfBusgrXM1aryHtV3h1xnx4qXNqlSYUCAQejfqXNBlz8MC0vIMtoMDSwgh3WwWgw_l9g56lQDYafHdWCPHFsbj8IaZb8zKtWkv-F67LRCN8unCsQhBxC_AFuFZGpM7LL16q8O4RD96Rhyi8aufNK3XDJROFZHnxj1SLc7nal7qkg01vc_xic/w200-h150/Gourds%20at%20farmer's%20market.jpg" width="200" /></a></span></div><span style="font-size: medium;">The Department of Health and Human Services has issued a proposed rule "Discrimination on the Basis of Disability in Health and Human Service Programs or Activities", intended to update, clarify, and strengthen the implementing regulation for Section 504 of the Rehabilitation Act of 1973. </span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;"><a href="https://vor.net/" target="_blank">VOR</a> contends that the policies of HHS, notably the actions taken over the years by the Administration for Community Living and several of the organizations they subsidize (including State P&As [a.k.a. Disability Rights] and DD Councils, University Centers for Excellence, and the National Disability Rights Network) have regularly committed acts of discrimination against those with the most severe and profound intellectual and developmental disabilities and their families.<br /><br />Below is the text of the letter to HHS:<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">To: U.S. Department of Health and Human Services, Office for Civil Rights<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><u>Proposed new implementing regulations on Section 504 of the Rehabilitation Act of 1973</u>: <b>Non-discrimination on the basis of disability in Health and Human Services programs or activities.</b><br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />VOR – A Voice of Reason advocates for a full continuum of care and a full array of residential services and employment opportunities for all people with intellectual and developmental disabilities and/or autism. We would like to remind HHS of the broad diversity that characterizes the individuals who make up this population, from those who need some assistance to function in society to those who cannot survive without 24 hour around-the-clock assistance.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />For the past 25 years, HHS has pursued “inclusion for all” policies that VOR believes have left behind the most disadvantaged members of this community. Before you take another step to dismantle more of these programs, we would urge you to review the purposes of the <a href="https://www.ada.gov/" target="_blank">ADA</a>, the <a href="https://vor.net/get-help/more-resources/item/olmstead-resources-2" target="_blank">Olmstead decision</a> and the real-world effects on the most vulnerable population that we believe has been demonstrably hurt and even died as a result of these policies. [Some disability organizations call for sweeping changes to close all residential programs and services that provide care in congregate settings serving more that 3 or 4 people with disabilities.] We urge you not to just count the number of large facilities closed and people moved into the community, but to assess whether their needs are being met, whether there are sufficient well-trained staff and the overall the quality of their lives, including the frequency of abuse and neglect and the mortality rates relative to their former homes.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />The ADA recognized the harm that our society had done by institutionalizing people who were “different” and called for giving them opportunities to participate in mainstream activities. Olmstead properly implemented that policy by permitting two individuals who wished to leave an institution and move into a less restrictive environment to do so, recognizing that institutional care was, by definition, segregated care. At the same time, Justice Ginsburg recognized that the I/DD population varied widely and that, for some people, an institution was the least restrictive environment.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />Since enactment of the ADA, government policy has helped thousands of people who were capable of living and prospering in the broader community to leave institutions and lead a more productive and filling life. The DD System overseen by HHS has played a major role s in helping people who seek care in less restrictive environments to transition into Home- and Community-Based Services (HCBS) settings or receive more at-home or own-home supplemental services. We applaud the success of these programs. At the same time, we have been concerned that this movement has ignored the reality that Justice Ginsburg recognized that some people can benefit most from institutional care and that ideological blinders have eroded another key component of the DD System – intermediate care facilities for people with intellectual disabilities (ICF or <a href="https://www.cms.gov/medicare/health-safety-standards/certification-compliance/intermediate-care-facilities-individuals-intellectual-disabilities-icfs/iid" target="_blank">ICF/IID</a>).<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />Part of the premise for pursuing the closure of ICFs has been the usually unspoken view that parents who choose ICF care for their loved ones are not acting in their best interest. Nothing could be farther from the truth. Being the parent or sibling of a child with severe or profound intellectual disability or autism presents a lifetime of tremendous challenges. Aside from the daily challenges posed by the child her/himself, one of the most difficult challenges is navigating the DD System. Parents and guardians try to make informed choices from a limited set of imperfect options. Most families’ first choice is to have their child live at home. As the child ages and new challenges emerge, the parents have to re-assess those options, often choosing a small privately operated group home. If and when the group home system fails to meet their child’s needs, they usually seek a higher level of care in a larger congregate setting. Unfortunately, our system usually makes this difficult decision even more difficult to realize. Federal and state policies favoring HCBS care over the years have reduced the number of available beds in ICFs and created a two-tiered system, favoring HCBS funding and decreasing funding for the ICF system. While many proponents of HCBS’ inclusionary policies see this as progress, the families that rely on ICF services feel they have been victims of discrimination by their own community and by the very systems that have been put in place to serve them.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />ICFs are not for everyone. Most people do benefit from some form of HCBS service. But not everyone. Larger congregate care facilities offer an economy of scale, allowing them to have 24/7 nursing, doctors on campus Monday – Friday and on call nights and weekends, dental clinics, psychiatric services and behavioral specialists, physical therapy, music therapy, swimming, and other services and amenities, most of which cannot be offered in a small group home. ICFs are more highly regulated by CMS and certification is far tougher than it is for HCBS services. Also, ICFs are required to offer active treatment, which may or may not be offered in group homes, but is not required. For people whose existential needs exceed their desire for acceptance by the non-disabled community, ICFs are essential.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />Section 504 prohibits discriminatory acts in health care and human services, including denying qualified individuals the opportunity to participate in or benefit from federally funded programs and services. ICFs are federally approved, federally funded residential facilities. Many states have closed admission to these facilities, or ceased to create new opportunities to receive care in these facilities in favor of moving individuals to HCBS services. We contend that Section 504 must protect the right to care in ICF settings as well as in HCBS settings.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />This discrimination has become accepted by all but those who need this level of care. The governors of several states have closed ICFs based on the biases of those who portray the ID/A population as a monolithic group that always benefits from community living. Presidential administrations have endorsed this ideology. The Department of Justice, too, has brought lawsuits, closing facilities for not meeting these arbitrary standards.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />The bias in favor of HCBS care was memorialized on April 18, 2012, when the Administration on Developmental Disabilities and other agencies were combined into the Administration for Community Living (ACL). Over the past decade, ACL has pursued an ideology of “everyone does better in the community” that ignores the fact that many of those with severe and profound I/DD and autism cannot. As a result of this directive, ACL has funneled millions of dollars into state DD Councils and state Protection and Advocacy agencies (P&A). These agencies have targeted ICFs, launching far more on-site investigations in these facilities than in group home environments, and using federal funds to initiate class action suits aimed at closing ICFs (Illinois, Ligas v. Maram, and Ohio, Ball v. Kasich to name just two. In both of these cases, the court found for the families defending ICF care, but at a huge personal cost to the families involved).<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />In addition to funding the National Association of Councils on Developmental Disabilities (NACDD) and the National Disability Rights Network (NDRN), the ACL provides funding for the Association of University Centers on Disabilities (AUCD). The AUCD conducts studies on matters affecting people with I/DD and autism, but usually limits the topics of their studies to those which will point to successful outcomes of programs initiated by the ACL. They have not conducted studies on mortality rates of people who have been forced out of their ICF homes of thirty or forty years when state governors have acted, either independently or at the direction of the state P&A or DOJ lawsuits, to close these facilities. They have not attempted to document the outcomes of people who have been forced out of sheltered workshops and 14(c) employment opportunities and wind up in day programs with no work, no pay, and no options, and forced into an even more segregated community with a cohort of more severely disabled individuals.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />Discrimination against the neediest people with ID/A also applies to employment opportunities. Employment facilities licensed under provisions of Section 14(c) of the Fair Labor Standards Act, aka sheltered workshops, have been under attack by many of the same groups that advocate for the closure of ICFs. Without these programs, most of those who participate in them would be left without daytime activities as the reality is that they cannot perform to a level that warrants paying them the minimum wage. Ideological dogma cannot change reality. Despite the fact that these are voluntary programs, and the fact that they are enthusiastically approved by a vast majority of those who participate in them (97%), non-participants with high acuity, non-intellectual disabilities, federal and state agencies, and federal and state legislators have been calling for these programs to be phased out and eliminated. Furthermore, we would contend that the states that have ended their 14(c) programs have already committed discriminatory acts against people with intellectual disabilities and autism, by denying qualified individuals the opportunity to participate in or benefit from federally funded programs, services, or other benefits. If we are indeed to rectify this discrimination, should we not insist that those states re-open access to 14(c) programs?<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />The normalization of these discriminatory policies by HHS also gives license to the Congress to enact legislation that further discriminates against the neediest component of the ID/A population. The continuing enactment of legislation that either increases funding for HCBS services only or establishes a favorable funding formula for those services instead of ICF services is yet another way that HHS is complicit in undermining services for those who need them the most. Advocating and supporting these discriminatory policies gut a federal program that remains on the books and provides valuable and often essential service. At the same time, it has not met its practical goals – to provide more money and better services for people who reside in HCBS facilities. It is past time for HHS to return to the basics of the ADA and Olmstead – to insure that individuals with ID can choose where they wish to live and to advocate for what is best for the individuals, as determined by them and their families and guardians, not by lawyers and professional advocates.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />The Supreme Court’s 1999 decision in Olmstead is often cited as a mandate for inclusion by self-advocates, well-endowed advocacy organizations, and government agencies. As indicated above, that is not what the decision says. Olmstead protects choice in its three-prong test and specifically acknowledges the need for “institutional” care, i.e. intermediate care facilities, in some circumstances. Justice Ruth Bader Ginsberg cited an amicus from VOR in her decision, stating, “Each disabled person is entitled to treatment in the most integrated setting possible for that person—recognizing that, on a case-by-case basis, that setting may be in an institution.” [1]<br />The Court was very clear that Olmstead was not to be viewed as a one-dimensional “inclusion mandate”, recognizing the need for States to maintain a range of facilities for the diverse needs of persons with developmental disabilities:<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />"Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States' need to maintain a range of facilities for the care and treatment of persons with diverse mental disabilities, and the States' obligation to administer services with an even hand." [2]<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. . . Nor is there any federal requirement that community - based treatment be imposed on patients who do not desire it." [3]<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />"[U]nder Title II of the ADA, States are required to provide community-based treatment for persons with mental disabilities [1] when the State's treatment professionals determine that such placement is appropriate, [2] the affected persons do not oppose such treatment, and [3] the placement can be reasonably accommodated , taking into account the resources available to the State and the needs of others with mental disabilities." [4]<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />"As already observed [by the majority], the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. . . Some individuals . . . may need institutional care from time to time 'to stabilize acute psychiatric symptoms’. . . For other individuals, no placement outside the institution may ever be appropriate...for these persons, institutional settings are needed and must remain available." [5]<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />To be clear, we understand that we are asking the very agencies that created these policies and discriminated against those with the most severe and profound levels of I/DD and autism to cease these discriminatory practices. But, before you move further down this path, we ask you to look at our families and our loved ones through our eyes for a few moments:<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />Having a child with a severe or profound intellectual disability or autism involves a lifetime of extremely difficult choices. Our families ask for your help and support in making the best choices, from a full range of high-quality options, not from a rigid ideology that does not comport with reality. We ask for this support from those in government who oversee the DD system and provide those services, and from the community of people with I/DD and autism and their families, who should be the first to empathize with our challenges and provide emotional support. It’s time we end the discrimination against those with the most severe intellectual and developmental disabilities and autism. These ideals should be at the heart of any re-assessment of Section 504.<br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br />---------------------------------<br />[1] Olmstead v. L.C., 527 U.S. 581, at 605<br />[2] ibid, at 597<br />[3] ibid, at 601-602<br />[4] ibid, at 607<br />[5] ibid, at 604-605</span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-88863933003764146272023-11-08T09:46:00.010-05:002023-11-08T10:20:43.593-05:00Resource Guide for parents and guardians of people with I/DD and Autism<div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"></div><div style="text-align: center;"><img alt="https://m.media-amazon.com/images/I/71owR-lBGBL._CR0%2C0%2C0%2C130_.jpg" class="shrinkToFit" height="552" src="https://m.media-amazon.com/images/I/71owR-lBGBL._CR0%2C0%2C0%2C130_.jpg" width="386" /> </div><div style="text-align: center;"> </div><div style="text-align: left;"> <span style="font-family: arial;"><br /><span style="font-size: medium;"><i>[This appeared as a blog post for the<a href="https://www.ncsautism.org/blog//new-book-reference-guide-to-idd-topics" target="_blank"> National Council on Severe Autism</a> on 10/30/23]</i><br /> </span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;">By Harris Capps<br /><br />I know it can be difficult for parents and caregivers to understand and navigate the disability care system in the U.S. I myself have a grown son with intellectual and developmental disability (I/DD) and have learned a lot over the decades, the hard way. Now I want to make it easier for others.<br /><br />That’s why I wrote the short book, “Essential Lexicon and Resource Guide.” It’s intended for parents, guardians, caregivers, advocacy and support groups, policymakers, educators, students, healthcare professionals, researchers, social workers and others who want a deeper understanding of our I/DD system in an easy-to-access format. It may be of interest to the reader that there are 21 entries that also provide an “Author’s Reflection” on terms such as “Deinstitutionalization,” “The Olmstead Decision,” and “Supported Decision Making,” as well as on NCSA’s own podcast, <a href="https://autismconfidential.org">Autism Confidential</a>.<br /><br />The book provides an overview of several areas: I/DD terms, the functions of I/DD government organizations, I/DD non-profit organizations that can help, I/DD-relevant websites, and key books on intellectual and developmental disabilities.<br /><br />The I/DD Terms section covers a wide range of topics including savings accounts exempt from Supplemental Social Security (SSI) income, autism spectrum disorder, deinstitutionalization, IEP vs. IEPs, self-determination, supported decision making, waiver programs, and Home and Community Based Services (HCBS). The section provides explanations of each term to help readers better understand the complex world of I/DD.<br /><br />The IDD Government Organizations section provides an A-to-Z guide to the federal agency responsible for I/DD policy. It also includes information on the network of University Centers of Excellence on Disabilities and the 10 resources of the Center for Parent Information & Resources. <br /><br />The I/DD Non-Profit Organizations section includes important I/DD organizations such as autism organizations as well as the 40-year-old organization advocating for a full continuum of care. <br /><br />The I/DD Relevant Websites section includes a range of websites that are relevant to individuals with IDD. These include websites that support people with “difficult behaviors,” a searchable index of government agencies, the blog hosted by the National Council on Severe Autism, and even the Disability History Museum. <br /><br />Finally, the Key Books on I/DD section includes books such as Amy Lutz’s “Chasing the Intact Mind,” (October 2023), the main diagnostic Manual on Mental Disorders, and The Handbook of High-Risk Challenging Behaviors in People with ID. <br /><br />In conclusion, this reference guide is a resource for anyone looking to deepen their knowledge of the I/DD landscape, from complex terminology to information on government organizations and key commentary.<br /><br />The book is available on Amazon <a href="https://www.amazon.com/Parents-Guardians-Essential-Lexicon-Resource/dp/B0C87S54LF/ref=sr_1_1?crid=3L2DN7DITLKZT&keywords=harris%20capps&qid=1698689958&sprefix=harris%20capps%2Caps%2C139&sr=8-1">here</a>.<br /><br /><i>Harris Capps is a parent, guardian, and advocate for his 47-year-old son, Matthew. Matt resides in an Intermediate Care Facility (ICF). Harris and his family live in Ohio.</i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i></i></span></span></div><div style="text-align: left;"><span style="font-family: arial;"><span style="font-size: medium;"><i><br /><b><br /></b></i></span></span></div>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-43407945890029085022023-11-06T14:46:00.012-05:002023-11-06T15:02:35.168-05:00A Coffee Shop staffed with people with intellectual disabilities draws harsh criticism from federally-funded disability rights advocates <div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/OIeslwNYfkE" width="320" youtube-src-id="OIeslwNYfkE"></iframe></div><p></p><p style="text-align: center;"><span style="font-family: arial;">Bitty and Beau's Coffee, Ann Arbor</span></p><p><span style="font-family: arial;"><span style="font-size: medium;">An Article in Disability Scoop, “<a href="https://www.disabilityscoop.com/2023/10/10/coffee-shop-hires-workers-disabilities-why-some-say-bad-news/30580/?fbclid=IwAR188K6cSSLI2vwCjxpcjE4ufFhgpRhIp_Dp-C0LKOWB8em-zXAw3zb5txE" target="_blank">Coffee Shop Hires Workers With Disabilities. Why Do Some Say That’s Bad News?</a>” by Morgan Hughes, from 10/10/23 caught my eye for several reasons. One is that there has been a campaign for years by disability rights advocates to oppose and eliminate congregate settings for people with I/DD that provide services or residential programs in groups of more than 3 or 4 individuals. That includes opposition to congregate work programs, group homes, day programs, specialized school programs, larger residential settings such as Intermediate Care Facilities for individuals with intellectual disabilities, family-initiated residential communities, and anything else that advocates may construe as "too institutional”. <br /><br />Many of the objections by disability rights advocates have been related to the use of federal or state funds paying for such programs. In the case of Bitty and Beau’s Coffee in Columbia, South Carolina, however, advocates have targeted a private business that receives no government funds and pays at least minimum wage to its employees. (<a href="https://theddnewsblog.blogspot.com/search?q=14%28c%29 " target="_blank">It does not participate in the federal 14(c) waiver program.</a>) <br /><br />Bitty and Beau’s is a chain of 19 coffee shops in 11 states. The company employs more than 400 people, most of whom have disabilities.This includes a coffee business on South Main Street in Ann Arbor, Michigan, where it is part of a bustling business district in a university town. I have not visited the Ann Arbor shop, but by all accounts, the employees, their families, and the community at large enthusiastically support the presence of this unique business. <br /><br />Objections to the coffee shop in South Carolina, come primarily from Able South Carolina, (<a href="https://www.able-sc.org/" target="_blank">AbleSC</a>), an organization “… established under the Rehabilitation Act to be run and operated by people with disabilities as a U.S. Department of Health and Human Services designated Center for Independent Living.” The organization received over 3.5 million dollars in government grants in 2021.<br /><br />According to the article in Disability Scoop, local disability rights advocates say Bitty and Beau’s creates an environment where inspiration is the goal. <br /><br />Kimberly Tissot, the CEO of AbleSC, “‘worried that employees with disabilities would be used like props, meant to offer customers smiles and hugs but not to be taken seriously as people…’ Businesses that employ only people with disabilities have also been known to pay below minimum wage because of a federal waiver that allows it, other disability rights advocates said.”...</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“But critics say even if employees are earning a fair income, the store sends the wrong message to people without disabilities.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“‘It kind of plays off the heartstrings to get people to open their wallets,’ said Crush Rush, a local disability rights advocate and AbleSC board member." He calIs it crudely, "inspiration porn."<br /><br />…“Despite the data, Tissot sees the business and those like it as counterproductive because she said the business segregates people with disabilities. She said that segregation can lead typically-developing people to think people with disabilities can only succeed in those environments. Tissot has a physical disability and a 13-year-old son with an intellectual disability.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b><i>Integrated employment for thee, but not for me?</i></b> </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The law (Title VII of the Rehabilitation Act establishing CILs) mandates that the majority of the CIL staff and individuals in decision making positions, including the governing board, must be individuals with disabilities. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">In other words, one could say that workers at AbleSC are employed in a congregate setting and serve</span></span><span style="font-family: arial;"><span style="font-size: medium;"> primarily others with disabilities</span></span><span style="font-family: arial;"><span style="font-size: medium;">.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">I see nothing inherently nefarious nor improper about Centers for Independent Living, but a little bit of self-reflection by the CIL disabled employees might temper the criticism coming from these organizations. Is it only when they are talking about people with intellectual disabilities that such congregate work arrangements are considered abhorrent? The hypocrisy is clear when one disability group attacks another on the basis of principles that they themselves do not follow.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b><i>“Nothing About Us, Without Us” except when “Us” doesn’t include you</i></b><br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Nothing in the Disability Scoop article indicates that </span></span><span style="font-family: arial;"><span style="font-size: medium;">representatives of AbleSC asked </span></span><span style="font-family: arial;"><span style="font-size: medium;">the employees of Bitty and Beau’s in Columbia, South Carolina, how they felt about their jobs and their place in the community. I think most of the workers in these businesses are able to communicate and if they are not, then why not ask their families how they respond to the work and whether they find satisfaction in what they do? </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">I agree with Amy Wright, one of the owners of the company, who says “I really wish those same disability advocates would take that frustration they are feeling and direct it toward other businesses in Columbia that don’t hire anyone with a disability.” </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">And for those who say they will boycott the business, that’s fine. That will make everyone’s life easier. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">************************</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i>More<a href="https://acl.gov/programs/aging-and-disability-networks/centers-independent-living" target="_blank"> information on CILs</a> from the Administration on Community Living..</i>. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><a href="https://www.bittyandbeauscoffee.com/" target="_blank"><i>Bitty and Beau's Coffee</i></a> </span><br /></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-37579633362611256002023-10-30T17:57:00.003-04:002023-10-30T18:01:46.240-04:00U.S. Department of Labor holds stakeholder listening sessions on special wage certificates that support employment for many with I/DD<p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sVGT2yC7_BYkzziYXb-KJbX2Qes8bHRaPJBQIuZ09WC61p1S7c248KJ17xvfY7r_AA7_2LlMgfjTm_ub74PY7m4iLze09yFPxqDo9vMaEvzzynrfByT8wviMW75j_Lmt0-0XGR8bO1hQghHrT46PN8OVhmxnzt6BnyscZ2aUijnDvmt2pZZDeHewvbE/s3482/23%2009%2019%20Rowers%20on%20Huron.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="3482" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-sVGT2yC7_BYkzziYXb-KJbX2Qes8bHRaPJBQIuZ09WC61p1S7c248KJ17xvfY7r_AA7_2LlMgfjTm_ub74PY7m4iLze09yFPxqDo9vMaEvzzynrfByT8wviMW75j_Lmt0-0XGR8bO1hQghHrT46PN8OVhmxnzt6BnyscZ2aUijnDvmt2pZZDeHewvbE/w174-h200/23%2009%2019%20Rowers%20on%20Huron.jpeg" width="174" /></a></span></div><span style="font-size: medium;">The U.S. Department of Labor (DOL) is conducting stakeholder engagement sessions as it reviews the use of 14(c) compensatory wage certificates for people with intellectual and developmental disabilities (I/DD). These are used by employers to make possible work programs that employ people who are unable to participate in regular competitive, integrated employment for reasons related to their disabilities. </span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">Section 14(c) of the FLSA (Fair Labor Standards Act) authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay subminimum wages - wages less than the Federal minimum wage - to workers who have disabilities for the work being performed.<br /><br />According to a Department of Labor <a href="https://www.dol.gov/agencies/whd/workers-with-disabilities/section-14c/certificate-holders" target="_blank">website</a>, Michigan businesses employ about 800 people under this federal program.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">****************************</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i>From the <a href="https://myemail.constantcontact.com/VOR-Weekly-News-Update---October-27--2023.html?soid=1129984413221&aid=Eso-KXFiJ3g" target="_blank">VOR Weekly News Update</a> for October 27, 2023:</i><br /><br />The first session was held on <b>Thursday, October 26, 2023</b>. <br /><br /><b><u>DOL - Additional Section 14(c) Stakeholder Engagement Sessions Announced</u></b><br /><br />In addition to last night's session [10/26/23], DOL is offering two more opportunities for families to speak on the importance of providing more options for people with I/DD and autism, rather than reducing the number and variety of services available.<br /><br /><span style="color: #cc0000;">NEW:</span><br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><u>Stakeholder Engagement Session #2: </u><br /><b>November 01, 2023, from 2:00 to 3:30 PM ET.</b><br />Members of the public wishing to participate must register in advance of the meeting by October 30 [Sorry! Registration is closed for this session]<br /><br /><u>Stakeholder Engagement Session #3:</u> <br /><b>November 15, 2023, from 5:30 to 7:00 PM ET.</b><br />Members of the public wishing to participate must register in advance of the meeting by November 1. <a href="https://usdolee.webex.com/webappng/sites/usdolee/meeting/register/30b71d6aaadf41eba7ee97d9eb98d686?ticket=4832534b00000004d67f9d4fe6d5735754a675f87f0eed379f7e449c3555ad2c9dd56570e8d93166&timestamp=1698702567716&RGID=r63ec93891f206b7045a7e1843c71f686" target="_blank">Click here to register</a><br /><br />For more information about these sessions, <a href="https://www.dol.gov/agencies/odep/14cEngagement" target="_blank">please click here</a></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">****************************</span></span><span style="font-family: arial;"><br /></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><span style="color: #cc0000;"><b>Last Night's [10/26/23] Session</b></span><br /><br />Last night's session ran nearly two hours. Participants were given 2 minutes to speak about their experience and their views on 14(c) programs.<br /><br />The first to speak was a representative from Microsoft, who announced that they oppose 14(c) programs, because they believe everyone with I/DD or autism can work for minimum wage or better. They announced that they had opened up over 500 jobs in competitive integrated employment.<br /><br />Microsoft's statement was allowed to run nearly 5 minutes, The two minute time limit was imposed after their representative delivered their prepared statement. This was, once again, a grim reminder that powerful organizations hold much larger influence over policy than do individuals or families of people with IDD and autism.<br /><br />Our friend Kit Brewer, a provider of 14(c) services and VP of the Coalition for the Preservation of Employment Choice, later spoke, thanking Microsoft for opening up 500 competitive jobs, but countered that providers in the State of Missouri have provided employment to over 5,000 people who prefer to work in sheltered workshops under 14(c).<br /><br />VOR's Dawn Kovakovich spoke of her daughter's growth over her adult life that is a direct result of her engagement in sheltered workshop. She also told the attendees that the best explanation for the need of 14(c) programs can be found in Chapter 4 of Amy Lutz; book, "<a href="https://www.amazon.com/Chasing-Intact-Mind-Severely-Intellectually/dp/0197683843" target="_blank">Chasing the Intact Mind</a>".<br /><br />Several self-advocates spoke of their feelings that people with I/DD or autism working for less than minimum wage was hurtful or degrading to them personally (that is, to the self-advocate, not the person who is working in the environment of their choosing). A representative from Diability Rights Kansas also spoke against sheltered workshops.<br /><br />Hugo Dwyer of VOR spoke of the difficult choices that families are forced to make throughout their lives to ensure what is best for their loved ones with I/DD and autism. These choices vary, depending on the individual in question and the options available, and how members of the disability community should work together and support each other's choices, even if those are not the choices they have made. We should support each other, empathize with each other's challenges, and respect the choices that each of us make.<br /><br />It is vitally important that VOR members sign up to speak at these meetings. Every voice in favor of 14(c) programs is needed, to help preserve these opportunities for those families who benefit from them.</span></span><br /></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-40569505154083034252023-10-30T10:58:00.007-04:002023-10-30T17:58:33.513-04:00At least four people from Maine's Deaf community were murdered in the mass shooting in Lewiston<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidvcOUqSVBh_e_G315OH5Bs8vtvBe4LEJnnhrdpo0Iljqw1nCHI5aRNyxT_dljVCYwoUNMDe_s35HvWPYA3KLR2OLZ9P9FJ0sPt37ScYdIGB0Cx6VPgeB8_0yFT1FkxL6oaE7jFZz7ElUUnR7O6XczHtdrRT2Y8RJAeRZkAYbVgtGTvKEzUBOzflG4ksM/s4032/23%2006%20June%20sunset.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidvcOUqSVBh_e_G315OH5Bs8vtvBe4LEJnnhrdpo0Iljqw1nCHI5aRNyxT_dljVCYwoUNMDe_s35HvWPYA3KLR2OLZ9P9FJ0sPt37ScYdIGB0Cx6VPgeB8_0yFT1FkxL6oaE7jFZz7ElUUnR7O6XczHtdrRT2Y8RJAeRZkAYbVgtGTvKEzUBOzflG4ksM/w150-h200/23%2006%20June%20sunset.jpeg" width="150" /></a></div><p><span style="font-family: arial;"><span style="font-size: medium;"><i>October 30, 2023</i> <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">In all, 18 people were killed and 13 wounded in a mass shooting on October 25, 2023. <br /><br />This is from an Associated Press article, "<a href="https://apnews.com/article/maine-shooting-lewiston-deaf-community-a6bfb5f48e45fd7a20317010bf6e18e8" target="_blank">Maine’s close-knit deaf community grieving by Patrick Whittle</a>, 10/28/23. It also appeared in the Detroit Free Press on Sunday, 10/29/23.<br /></span></span></p><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">“FALMOUTH, Maine – Maine’s closeknit community of deaf and hard of hearing people is grieving in the wake of the Lewiston shootings that killed beloved members, many of whom were ardent advocates.”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Joshua Seal, 36, Billy Brackett, 48, Steve Vozzella, 45, and Bryan MacFarlane, 41, were all associated with the the <a href="https://www.mecdhh.org/ " target="_blank">Maine Educational Center for the Deaf</a> and the Governor Baxter School for the Deaf located in Falmouth, near Portland, ME. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Seal had four deaf children who were all connected to the institutions’ educational programs, and Brackett attended the school and had a daughter who was in early intervention. MacFarlane also attended the school as a student and Vozzella’s wife, Megan, was an alumnus of the school, according to the article.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">This is a sad reminder that none of us is free from the risk of being victims of gun violence, or a survivor of gun violence and living with the disabilities and psychological trauma caused by these events.<br /></span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-48265686089270790862023-09-29T10:11:00.083-04:002023-09-29T12:18:46.266-04:00Possible Effects of a Government Shut-down<p></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiSYTJndQSf7J17z6Ts_UC2ckYkvqHyl7T5AcSzitb5HHKspG49rpEmn5srACGZPUdvl35YhUItgouDvvdoRXOeaBSoMN-pgkVJl1UMkl4oYu1RpgdI2a3p5iadrk6r_T-ATf3xteumbLL-OUjccqEKPHjLzJVaURJKNJ2IxGikYc_T_XJJAXWX93sPl0/s640/Maple%20Red.jpg" style="clear: left; float: left; font-family: arial; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="503" data-original-width="640" height="158" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiSYTJndQSf7J17z6Ts_UC2ckYkvqHyl7T5AcSzitb5HHKspG49rpEmn5srACGZPUdvl35YhUItgouDvvdoRXOeaBSoMN-pgkVJl1UMkl4oYu1RpgdI2a3p5iadrk6r_T-ATf3xteumbLL-OUjccqEKPHjLzJVaURJKNJ2IxGikYc_T_XJJAXWX93sPl0/w200-h158/Maple%20Red.jpg" width="200" /></a></span></div><span style="font-size: medium;"><span style="font-family: arial;"><i>A totally unnecessary and irresponsible shut-down of the Federal Government may occur as early as Sunday, October, 1, 2023. This is promoted by MAGA Republicans in the House of Representatives and opposed by Democrats along with a few House Republicans. As we wait for sanity to return, here is an e-mail from Representative Debbie Dingell from Michigan's 6th District.</i></span></span><p></p><p><span style="font-size: medium;"><span style="font-family: arial;">****************************<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><br />Dear Friend,</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Funding for the federal government expires on September 30, and we are working every day to do everything possible to prevent a government shutdown. A shutdown would be irresponsible and could cause uncertainty and harm to many programs and people. It is not the way to run the government. Unfortunately, not everyone agrees. This letter is to help you plan for a possible federal government shutdown, and we have tried to provide answers to the most frequently asked questions. We will continue updating <a href="https://debbiedingell.house.gov/government-shutdown-frequently-asked-questions/">my website </a>with information as we receive it, and you can sign up to receive my email updates <a href="https://debbiedingell.house.gov/forms/emailsignup/">here</a>. Should you have issues or need help, you can contact any of my offices and we will do the best job we can in assisting you during these challenging times. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b><u>Will I continue to receive my Social Security and SSI checks?</u></b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Recipients will continue to receive their Social Security and SSI checks. The Social Security Administration (SSA) will provide limited services like issuing Social Security cards and holding appointments for benefit applications. However, SSA will stop services like benefit verifications and processing overpayments. Customer service wait times will dramatically increase. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Will Medicare and Medicaid benefits be affected? </u></b></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Current Medicare, Medicaid, and disability insurance beneficiaries will continue to receive their benefits assuming a shutdown lasts less than three months. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What happens to veterans' services? </u></b><br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">All Veterans Affairs (VA) medical facilities and clinics will remain operational. The VA will continue to process veterans’ benefits. However, veterans will be affected by the shutdown of other services that they count on, including education and job training, support for veteran- owned businesses, and even assistance for homeless veterans. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Which federal employees keep working during a government shutdown?</u></b> <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">When the government shuts down, federal agencies are required to classify their employees whose salaries have lapsed as either "excepted" or "not excepted." The employees classified as "excepted" work without pay during the shutdown. The employees classified as "not excepted" are put on unpaid furlough. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><b><br /><u>What is the impact on U.S. military personnel and federal law enforcement?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">All active-duty and Guard and Reservists on active-duty orders are excepted and therefore are required to work without pay. On-base non-acute health care will cease, although off-base care provided through Tricare will not be affected. On-base child care will be open on a case-by-case basis. Federal law enforcement will also be required to work without pay for the duration of a shutdown. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Will military and federal retiree benefits be suspended?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Military and federal retirees will continue to receive their retirement benefits. Processing new applications or other requested changes will be delayed. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Will air travel be affected?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Air traffic controllers, Transportation Security Administration (TSA) officers, and Customs and Border Protection (CBP) agents will remain on the job without pay. If some do not report to work, as has happened in prior shutdowns, there will be significant delays and longer wait times across the country. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What does this mean for disaster relief efforts?</u></b> <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Federal Emergency Management Agency (FEMA) staff will still respond to emergencies, but all long-term projects will be delayed due to a lack of funding in the Disaster Relief Fund. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>How will this affect environmental protection and cleanup?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The Environmental Protection Agency (EPA) will stop inspecting most hazardous waste sites, as well as drinking water and chemical facilities. Efforts to address dangerous contaminants like PFAS — which are linked to severe health effects, including cancer — will be delayed, and cleanup activities at Superfund sites will slow or cease. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What is the impact on food assistance? </u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) will quickly run out of funding and be unable to provide food for children and parents in need. In the case of a prolonged shutdown, Supplemental Nutrition Assistance Program (SNAP) benefits may also be affected. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What is the impact on food safety activities?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Food and Drug Administration (FDA) food safety activities — such as routine inspections of facilities — will be delayed across the country. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What is the impact on housing?</u></b> <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The Federal Housing Administration (FHA) will stop insuring some new mortgages and the Department of Housing and Urban Development (HUD) will stop processing some new loans. The Department of Agriculture (USDA) will stop new loan and loan guarantee activity. The VA will continue to guarantee home loans. Funding for federal housing assistance programs, such as Housing Choice Vouchers, may be jeopardized in a prolonged shutdown. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>How will this affect small businesses?</u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The Small Business Administration (SBA) will stop processing new business loans, such as through the 7(a) and 504 programs. However, SBA’s Disaster Loan Program will continue regular operations. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Will my mail still arrive? </u></b> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Yes. The U.S. Postal Service is not affected by a shutdown. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>What does this mean for medical research? </u></b><br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The National Institutes of Health (NIH) will be forced to delay new clinical trials. New patients who are waiting for a chance at new treatment through a clinical trial will be turned away. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>Will I still be able to visit National Parks and monuments? </u></b><br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Across the country, services that require National Park Service staff — including trash removal and operating campgrounds and concessions — may be stopped. Closures will be determined on a location-by-location basis; open-air parks and monuments in Washington, D.C. will likely remain accessible. Smithsonian museums may also be impacted by a lengthy shutdown. <br /></span></span> <span style="font-size: medium;"><span style="font-family: arial;"><br /><b><u>How does this affect State Department operations?</u></b> <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Consular services, passport services, and visa services are expected to continue in the immediate aftermath of a government shutdown. In a prolonged shutdown, passport and visa issuance could be slowed. Access to passport agencies located in some government buildings may be limited. <br /></span></span> <span style="font-family: arial;"><span style="font-size: medium;"><br /><b><u>What is the impact on state and local services?</u></b> <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The federal government shutdown will not immediately affect any state or local services. However, with federal funding cut off, some state or local governments may have to change their operations. Check with state and local agencies for specific questions. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">For more updates, sign up to receive my email newsletter <a href="https://debbiedingell.house.gov/forms/emailsignup/">here</a>.</span><br /></span></p><div class="component" style="-webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; padding: 0px; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div class="spacing" style="overflow: hidden; width: 648px;"><table border="0" cellpadding="0" cellspacing="0" class="responsive-table" role="presentation" style="border-collapse: collapse; border-spacing: 0px; margin-left: 20px; margin-right: 20px;" width=""><tbody><tr><td style="min-width: 100%;"><table border="0" cellpadding="0" cellspacing="0" role="presentation" style="border-collapse: collapse; border-spacing: 0px; width: 100%;"><tbody><tr class="spacerRow" height="16"><td style="line-height: 16px;"><span style="font-size: medium;"><span style="font-family: arial;"> </span></span></td></tr></tbody></table></td></tr></tbody></table></div></div><div class="component" style="-webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; padding: 0px; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div class="signature" style="overflow: hidden; width: 648px;"><table align="center" border="0" cellpadding="0" cellspacing="0" class="responsive-table" role="presentation" style="border-collapse: collapse; table-layout: fixed; width: 608.667px;"><tbody><tr><td valign="top"><table align="left" class="signature-table" role="presentation" style="border-collapse: collapse; table-layout: fixed;"><tbody><tr><td><table align="left" border="0" cellpadding="0" cellspacing="0" role="presentation" style="border-collapse: separate;"><tbody><tr><td valign="top"><div class="ng-binding" style="overflow: hidden;"><span style="font-size: medium;"><span style="font-family: arial;">Sincerely,</span></span></div></td></tr><tr><td class="image-td" valign="top"><div class="img-1 image-container" style="overflow: hidden; text-align: left;"><span style="font-size: medium;"><span style="font-family: arial;"><img alt="Debbie Dingell Signature" src="https://debbiedingell.house.gov/images/email/sig.png" style="border: 0px; height: auto; line-height: 16px; max-width: 100%; outline: none; text-decoration: none; vertical-align: bottom; width: 214px;" width="214" /></span></span></div></td></tr><tr class="spacerRow" height="0"><td style="line-height: 0px;"><span style="font-size: medium;"><span style="font-family: arial;"> </span></span></td></tr><tr><td valign="top"><div class="ng-binding" style="overflow: hidden;"><span style="font-size: medium;"><span style="font-family: arial;">Debbie Dingell<br />Member of Congress</span></span></div></td></tr></tbody></table></td></tr></tbody></table></td></tr></tbody></table></div></div><div class="component" style="-webkit-text-stroke-width: 0px; caret-color: rgb(0, 0, 0); color: black; font-style: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; padding: 0px; text-align: start; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><div class="spacing" style="overflow: hidden; width: 648px;"><table border="0" cellpadding="0" cellspacing="0" class="responsive-table" role="presentation" style="border-collapse: collapse; border-spacing: 0px; width: 608px;"><tbody><tr><td style="min-width: 100%;"><table border="0" cellpadding="0" cellspacing="0" role="presentation" style="border-collapse: collapse; border-spacing: 0px; width: 100%;"><tbody><tr class="spacerRow" height="16"><td style="line-height: 16px;"><span style="font-size: medium;"><span style="font-family: arial;"> </span></span></td></tr></tbody></table></td></tr></tbody></table></div></div><div style="text-align: center;"><span style="font-family: arial;"><span style="font-size: medium;">P.S. You can share a story or contact me anytime about health care or other issues through my <a href="https://debbiedingell.house.gov/">website</a>. You can also receive real-time updates by following me on <a href="https://www.facebook.com/repdebbiedingell">Facebook</a>, <a href="https://www.twitter.com/RepDebDingell">Twitter</a> and <a href="https://www.instagram.com/repdingell">Instagram</a></span></span><br /><span style="font-family: arial;"></span></div>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-71511076775692891482023-09-28T08:47:00.004-04:002023-09-28T08:49:11.209-04:00Cancer Screening Survey for People with I/DD<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuNcQK5PkfYg7LZtR0Z13w0jcHuLURpr3I4kkds13X6lUwtqCeg08Va6HjOGCL8g2n2hXAOlDP9oZxL3miRaUau9W7ljSdPUFhiYqmY_6DN5J5cjj6LihH05vCyTB-JCFc-yTCT6PU9OnOa8OBoImnKks-8v95LhbYKmOC_YnK5yheofmhh-EqzIF1UBE/s640/15%2010%20fall%20morning.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="360" data-original-width="640" height="113" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuNcQK5PkfYg7LZtR0Z13w0jcHuLURpr3I4kkds13X6lUwtqCeg08Va6HjOGCL8g2n2hXAOlDP9oZxL3miRaUau9W7ljSdPUFhiYqmY_6DN5J5cjj6LihH05vCyTB-JCFc-yTCT6PU9OnOa8OBoImnKks-8v95LhbYKmOC_YnK5yheofmhh-EqzIF1UBE/w200-h113/15%2010%20fall%20morning.jpg" width="200" /></a></div><span style="font-size: medium;"><span style="font-family: arial;"><a href="https://vor.net/ " target="_blank">VOR</a><u> received this <a href=" https://myemail.constantcontact.com/VOR---Survey-on-Cancer-Screening-for-People-with-I-DD.html?soid=1129984413221&aid=Ste27pO1d3o" target="_blank">request</a> for participants in a survey of parents and caregivers of people with I/DD (Intellectual and Developmental Disabilities) regarding cancer screening for people with I/DD. <br /></u></span></span><p></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i>From VOR</i></span></span><span style="font-size: medium;"><span style="font-family: arial;">: </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i>We received a request from a young woman who is conducting a survey on cancer screening of people with intellectual disabilities for her Master's Thesis. Her letter and a link to the study are attached below.<br /><br />We hope that those of our members who have loved ones with I/DD who have had cancer screenings will participate in this study, not only to help protect the interests of the I/DD population as a whole, but to make sure that those with more severe/profound I/DD and autism are well represented in the study.</i></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i>[to contact VOR, email <a href="mailto:info@vor.net">info@vor.net</a></i>]</span></span><span style="font-size: medium;"><span style="font-family: arial;"><i> <br /></i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i>****************** </i><br />To Whom It May Concern,</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">My name is Jennifer Ryan, and I am a second year Master’s Student in the University of South Carolina Genetic Counseling Program. For my thesis research, I am working to survey parents and caregivers of patients with intellectual disability in regard to patients’ experiences with cancer screening. <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Patients with intellectual disability have around the same risk to develop cancer during their lifetime compared to the general population, but are screened for cancer at much lower rates. Through my research, I am hoping to gather family and caregiver perspectives and opinions in order to break down barriers to care and to provide resources to these individuals to help them obtain routine screenings. <br /><br />A poster about my research is attached and the link to complete the survey is: <a href="https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE">https://redcap.healthsciencessc.org/surveys/?s=L8MX44TYMHFHN3YE</a>. <br /><br />Thank you for your time and consideration. Please feel free to reach out to me if you have any questions about the project.<br /><br />Best,<br />Jennifer Ryan</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i>Please contact <a href="mailto:jlr19@uscmed.sc.edu">jlr19@uscmed.sc.edu</a> with any questions</i></span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-72728188482157275772023-09-25T14:47:00.008-04:002023-09-25T14:49:19.488-04:00September 26th Project Video 2023 from the National Council on Severe Autism<p></p><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/FsSbHv8O5As" width="320" youtube-src-id="FsSbHv8O5As"></iframe></div> <p></p><p><span class="yt-core-attributed-string yt-core-attributed-string--white-space-pre-wrap" role="text"><span class="yt-core-attributed-string--link-inherit-color" style="color: #131313; font-family: arial;"><span style="font-size: medium;"><i><u>From the National Council on Severe Autism</u></i>: Every year, around September 26th, we provide reminders, inspiration and information to autism and special needs families about emergency preparedness, in honor of the late Feda and Muhammed Almaliti, who perished in a tragic house fire on September 26, 2020.
This year's video focuses on the story of Denise Lombardi, an autism mom in upstate New York who felt a call to take action and become a firefighter herself.
We hope all autism families will take just 10 minutes every September to consider what steps, even very small steps, they can take to be prevent disaster.
Our website -- <a href="http://September26.org">September26.org</a> -- offers checklists, and our videos, social media, podcasts and webinar offer ideas and help.
Sponsored by the National Council on Severe Autism <a href="http://NCSAutism.org">NCSAutism.org</a>.</span></span></span></p><p> </p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-6232160226660941582023-09-12T15:19:00.004-04:002023-09-12T15:31:07.947-04:00Autism Confidential: a podcast from the National Council on Severe Autism<p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmwhvfgw7T0grfl1TkryLiHMgNsEpd2qd4uDPGUn0D0hrDIKwQSoMPjrrrbCGSmM-XL_YHijUIC4aetWtc5Nr0DDGDkNNca8LatdBX6H0BAaiH8a8GU8cggtGtPcNKNQyFy1yrYetsYq2AzSn0oF_hwtmSFT1wUgwC_i6usY9JdnFpbmsTCYq5XCAILm8/s4032/IMG_4794.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmwhvfgw7T0grfl1TkryLiHMgNsEpd2qd4uDPGUn0D0hrDIKwQSoMPjrrrbCGSmM-XL_YHijUIC4aetWtc5Nr0DDGDkNNca8LatdBX6H0BAaiH8a8GU8cggtGtPcNKNQyFy1yrYetsYq2AzSn0oF_hwtmSFT1wUgwC_i6usY9JdnFpbmsTCYq5XCAILm8/w150-h200/IMG_4794.jpeg" width="150" /></a></span></div><span style="font-size: medium;"><span style="font-family: arial;">The <a href="https://www.ncsautism.org/" target="_blank">National Council on Severe Autism</a> sponsors a mostly weekly podcast that is available from the usual Podcast platforms and on Youtube.</span></span><span style="font-size: medium;"><span style="font-family: arial;"><br /><br />I do not have a family member with autism. My two sons, Danny, who died last year at the age of 46, and Ian, who is 38 years old, experienced profound intellectual and severe physical disabilities from birth. My cohort of parents and other family members who care for people with profound intellectual and developmental disabilities are not exactly in the same club with these autism parents, but we are just down the hall, with many overlapping issues and similar concerns about the romanticizing of disability, the inability of many advocates to acknowledge the severity of the most profoundly disabled people, and a tendency to blame parents for making people with disabilities look bad because parents insist on speaking truthfully about their own children. <br /></span></span><p></p><p><span style="font-size: medium;"><span style="font-family: arial;">**********************<br />From the <a href="https://www.autismconfidential.org/" target="_blank">NCSA website</a>:<br /><br />"Welcome to Autism Confidential, the podcast from the National Council on Severe Autism. We shine a light on the hottest issues in the world of autism, including topics often shunned by conventional media. Who cares for autistic adults after their parents die? How can we fix our broken care system? What interventions help, or hurt? Join hosts Jill Escher, Amy Lutz and others from NCSA as they take on the hardest questions of autism with leading thinkers and doers."<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Find it on Apple <a href="https://podcasts.apple.com/us/podcast/autism-confidential/id1614323506" target="_blank">here</a><br />Find it on Spotify <a href="https://open.spotify.com/show/3NYKZ1sKDLEKVMVFeJEVxH?si=05sCZRO3T56UneeUcYojrw&nd=1" target="_blank">here</a><br />Find it (with video) on YouTube <a href="https://www.youtube.com/watch?v=FwUUJn0TTfg&list=PLXZpSc1bu7Y42C3kx-I6R_GoD721QDVDu" target="_blank">here</a> </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Have ideas for episodes or speakers? Please email us at NCSA Admin <info@ncsautism.org><br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Interested in becoming a sponsor? Please email us at NCSA Admin <info@ncsautism.org></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">**********************</span></span><br /><span style="font-size: medium;"><span style="font-family: arial;"><br />Jill Escher is a podcast host with just the right combination of personal experience (two of her children have profound non-verbal autism) and technical expertise to offer engaging weekly interviews on a variety of topics with family members and experts in the autism world.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">For a description of Jill Escher’s busy life, see her <a href="https://www.jillescher.com/" target="_blank">webpage</a>. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Part of what she does is promote and fund research “on the genetic toxicology of autism and related neurodevelopmental pathologies” which sets the scene for the very latest podcast from Autism Confidential, <u>Episode #044</u>, entitled “Autism Research Roundup”. Her guest is Dr. Alycia Halliday, chief Science Officer of the <a href="https://autismsciencefoundation.org/" target="_blank">Autism Science Foundation</a>. Jill and Alycia (also an autism parent) debate the role of genetics as a cause of autism. Genetics is responsible for possibly 20% of autism cases, but much of autism is unexplained or not understood. Jill is a proponent of looking at other causes and there is good-natured sparring on the current debate on causes. The two also discuss studies on early intervention that show improvement in functioning in young children, but early intervention is not shown to overcome the disability. One thing they agree on totally is that no one should take medical advice from Tik-Tok videos.<br /><br />I love this stuff, but I know not everyone is enthralled with the science-y part of disability. I also love local heroes who do things rather than just talk about them. In <u>Episode #042</u>, Jackie Ceonzo from New York City is a local hero that I would like to meet. She is the founder of <a href="https://www.snacknyc.com/ " target="_blank">SNACK*</a> that provides recreational classes and instructional programs for kids and young adults, located in Midtown East, NYC. Jackie’s autistic son is among those who was constantly rejected for being too autistic. She took matters into her own hands (with the help of many others) and developed a center where her son “…Joey and other children with special needs would be welcome, regardless of their language abilities, behavioral challenges or skill level. She envisioned a place where parents and children would feel comfortable socializing and learning life and recreation skills in a creative and safe environment.”<br /><br /><u>Episodes #37 and #38 </u>deal with “Dental Care for Patients with Autism, with Dr. Allen Wong. “By popular request we are featuring two episodes devoted to all things teeth and dentistry, which looms as a huge issue for autism families. Allen Wong, DDS, is Director of Advanced Education in General Dentistry, Residency Program, University of the Pacific. He teaches dentistry for special health care needs, and hospital dentistry as well. Daily tooth care can be difficult for severely autistic kids and adults, and accessing clinical care can be especially difficult when there is a very sensitive or uncooperative patient.”<br /><br /><u>In Episode #33</u>: "Bridging the Divide", the podcast veers boldly into the divided autism community with Morénike Giwa Onaiwu, a prominent neurodiversity advocate. “…We were thrilled when she agreed to join us for a special episode about the splintered autism community. We had a productive conversation, and spoiler alert, not many sparks flew. In reality, we found we had much more in common than not, and share a passion for tangible progress in the field of lifespan autism care and housing.” </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">My favorite observation from Morénike was that there are horrible people everywhere. I can agree with that, even when I don't much like the neurodiversity movement’s attempt to describe all disability as part of a normal continuum of human experience.<br /><br /><u>Episode 29</u>: Just Say No to the Bullying of Autism Parents<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"Pioneering autism advocate Thomas McKean joins us again...to discuss the bizarre online phenomenon of anti-parent bullying by militant autism self-advocates. Like witch hunts of yore, autism parents are too often accused, without evidence, of all manner of sins: torturing their children, infantilizing them, of self-aggrandizement, of ableism, eugenics, and more. Tom McKean says 'Enough!' to this nonsense in an emotional discussion with NCSA's Jill Escher. Please listen to the very end for Tom's gorgeous, spontaneous soliloquy about the profound love autism parents have for their children."<br /><br /><u>Episode 27</u>: Thriving with Severe Autism at Bittersweet Farms <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">This is close to home. Bittersweet Farms, near Toledo, Ohio, is “a pioneering model of a farmstead-based residential and day program serving adults with autism complex behavioral needs. In a world where severely autistic adults are routinely rejected from programs, Bittersweet is a rare treasure. We talk with Dustin Watkins, the program's executive director, about the nature of the programs, the benefits of an outdoor, open-space setting for many adults with autism, the meaning and purpose of their physical and creative efforts on the farm, issues around Medicaid ICF and HCBS models, staffing challenges, the community and connection found in programs like Bittersweet, the financial model, and more. “<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">And then there is <u>Episode 18:</u> The Poop Episode by Dr Joyce Tu and Kelly Bermingham, which is to say that the podcast has something for everyone.<br /></span></span> </p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-57629568947326777892023-09-05T17:30:00.002-04:002023-09-05T17:36:21.379-04:00VAERS reports on adverse events from vaccines are unverified claims and do not support claims of deaths from vaccines<p><span style="font-size: medium;"><span style="font-family: arial;"><b><a href="https://kffhealthnews.org/news/article/activist-misuses-federal-data-to-make-false-claim-that-covid-vaccines-killed-676000/view/republish/" target="_blank">Activist Misuses Federal Data to Make False Claim </a><u>That Covid Vaccines Killed 676,000</u></b><br /><br />By Tom Kertscher, PolitiFact </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">September 1, 2023 <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Covid-19 vaccines have killed 676,000 Americans. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Steve Kirsch in an <a href="https://kirschsubstack.com/p/vaers-data-is-crystal-clear-the-covid" target="_blank">Aug. 6, 2023</a>, blog post<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">A blog post shared on Facebook claimed that covid-19 vaccines have killed some 676,000 Americans.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The post was written by anti-vaccine <a href="https://www.technologyreview.com/2021/10/05/1036408/silicon-valley-millionaire-steve-kirsch-covid-vaccine-misinformation/" target="_blank">activist Steve Kirsch</a>, who has made other <a href="https://www.politifact.com/factchecks/2021/nov/10/steve-kirsch/claim-about-gavin-newsoms-reaction-covid-19-booste/" target="_blank">vaccine claims</a> <a href="https://www.politifact.com/factchecks/2021/dec/21/steve-kirsch/contorted-claim-children-killed-covid-19-vaccines-/" target="_blank">debunked</a> by PolitiFact and <a href="https://leadstories.com/cgi-bin/mt/mt-search.fcgi?IncludeBlogs=1&search=steve+kirsch" target="_blank">other fact-checkers</a>. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Kirsch’s Aug. 6 post referred to the Vaccine Adverse Event Reporting System, a <a href="https://www.politifact.com/article/2021/may/03/vaers-governments-vaccine-safety-database-critical/" target="_blank">federal database</a>.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">“VAERS data is crystal clear,” the headline read. “The COVID vaccines are killing an estimated 1 person per 1,000 doses (676,000 dead Americans).”</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The blog post was shared on social media and flagged as part of Meta’s efforts to combat false news and misinformation on its News Feed. (Read more about <a href="https://www.facebook.com/help/1952307158131536?helpref=related" target="_blank">PolitiFact’s partnership</a> with Meta, which owns Facebook and Instagram.) <br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The data Kirsch used is from an anti-vaccine group’s alternative gateway to VAERS. VAERS, which includes unverified reports, cannot be used to determine whether a vaccine caused death. Kirsch did not reply to our request for information.<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">“Statements that imply that reports of deaths to VAERS following vaccination equate to deaths caused by vaccination are scientifically inaccurate, misleading and irresponsible,” the Centers for Disease Control and Prevention, which co-manages the database with the FDA, told PolitiFact.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The CDC added that it “has not detected any unusual or unexpected patterns for deaths following immunization that would indicate that COVID vaccines are causing or contributing to deaths, outside of the nine confirmed” thrombosis with thrombocytopenia syndrome, or TTS, deaths following the Johnson & Johnson/Janssen vaccine, which is no longer offered in the U.S.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">TTS, which causes blood clots, has occurred in approximately four cases per million doses administered, <a href="https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html" target="_blank">according to the CDC</a>.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><a href="https://www.politifact.com/article/2021/may/03/vaers-governments-vaccine-safety-database-critical/" target="_blank">VAERS helps researchers</a> collect data on vaccine aftereffects and detect patterns that may warrant a closer look.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">The CDC cautions that VAERS results, which come from unverified reports anyone can make, are not enough to determine whether a vaccine causes a particular adverse event.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">For the covid vaccines, VAERS has received a flood of reports, and they have become especially potent fuel for misinformation.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Kirsch made his claim not by using VAERS directly, but with an alternative gateway to VAERS from the anti-vaccine National Vaccine Information Center. </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">That website draws on raw and limited VAERS reports, which can include incomplete or inaccurate information. These reports <a href="https://www.politifact.com/article/2022/feb/28/how-alternative-gateway-vaers-data-helps-fuel-vacc/" target="_blank">do not</a> provide enough information to determine whether a vaccine caused a particular adverse event.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"> There is no evidence that covid vaccines have killed Americans in large numbers, let alone 676,000. We rate the claim Pants on Fire!</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Our sources<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Steve Kirsch’s newsletter, “VAERS Data Is Crystal Clear: The COVID Vaccines Are Killing an Estimated 1 Person per 1,000 Doses (676,000 Dead Americans),” Aug. 6, 2023 </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Health Feedback, “VAERS Data Don’t Show That COVID-19 Vaccines Are Deadly; Steve Kirsch’s Claim to the Contrary Relied on Flawed Analysis,” Aug. 6, 2023</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Facebook, <a href="https://www.facebook.com/ChrisStreet78/posts/pfbid02zRnBfsrALugBzqbwHnAsFgJZdwd251Sreu7VvwvJXfanxsvGcATDKGqXYvqZgwz2l" target="_blank">post</a>, Aug. 8, 2023<br /></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">PolitiFact, <a href="https://www.politifact.com/article/2022/feb/28/how-alternative-gateway-vaers-data-helps-fuel-vacc/" target="_blank">“How an Alternative Gateway to VAERS Data Helps Fuel Vaccine Misinformation,”</a> Feb. 28, 2022</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">PolitiFact, <a href="https://www.politifact.com/article/2021/may/03/vaers-governments-vaccine-safety-database-critical/" target="_blank">“Federal VAERS Database Is a Critical Tool for Researchers, but a Breeding Ground for Misinformation,”</a> May 3, 2021</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Centers for Disease Control and Prevention, <a href="https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html" target="_blank">“Selected Adverse Events Reported After COVID-19 Vaccination,” </a>July 13, 2023</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Email, Centers for Disease Control and Prevention, Aug. 10, 2023</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><a href="https://kffhealthnews.org/about-us/" target="_blank">KFF Health News</a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">USE OUR CONTENT This story can be republished for free (<a href="https://kffhealthnews.org/news/article/listen-to-the-latest-kff-health-news-minute/view/republish/" target="_blank">details</a>).</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i><a href="https://kffhealthnews.org/about-us/" target="_blank">KFF Health News</a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about <a href="http://KFF." target="_blank">KFF.</a></i></span><i><br /></i></span> </p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-5879321087059593692023-09-01T11:33:00.012-04:002023-09-01T11:38:14.372-04:00Illinois: A mother’s plea for better oversight of group homes for people with disabilities<p><span style="font-family: arial;"><span style="font-size: medium;">This is an <a href="https://www.ksdk.com/article/news/investigations/mother-begs-better-oversight-group-homes-people-with-disabilities/63-00717bf2-2762-41ae-aaec-5bde2ac53800?fbclid=IwAR10wz-pqQ_K80NuxiWkiqykDHP6ViR8UzuOJQXWinfnbtJhtEj78K35MVY" target="_blank">investigative report</a> from KSDK in St. Louis into oversight of Illinois CILAs (Community Integrated Living Arrangements), group homes for people with intellectual and developmental disabilities (I/DD): <i>'People look the other way': Mother begs for better oversight of group homes for people with disabilities,</i> by Paula Vasan, 10/6/2022.</span></span></p><span style="font-family: arial;"><span style="font-size: medium;"><blockquote>“PINCKNEYVILLE, Ill. — A mother’s love is limitless. It means fighting for your child.'We had 30 to 40 ER visits in less than three years,' said Peggy Strong. 'My daughter almost died.' She said it was because of a problem her daughter Marjorie couldn’t tell her about. 'She also is non-verbal. She is incapable of fending for herself,' said Strong.”…</blockquote></span></span><p><span style="font-family: arial;"></span><span style="font-family: arial;"><span style="font-size: medium;"> Read the article, but also view these two interviews on Youtube to get the full story:</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><span style="font-size: medium;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/5hOCXPBb1yM" width="320" youtube-src-id="5hOCXPBb1yM"></iframe></span></span></div><span style="font-family: arial;"><span style="font-size: medium;"><a href=" https://www.youtube.com/watch?v=5hOCXPBb1yM&t=3s" target="_blank">Extended interview: Peggy Strong</a></span></span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">Peggy Strong's daughter, Marjorie, lived in a taxpayer-funded group home in Pinckneyville, Illinois. Strong said case managers told her it was the best option for her daughter. Red flags seemed to prove otherwise.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><span style="font-size: medium;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/kZuSKS7XkPE" width="320" youtube-src-id="kZuSKS7XkPE"></iframe></span></span></div><span style="font-family: arial;"><span style="font-size: medium;"><a href=" https://www.youtube.com/watch?v=kZuSKS7XkPE&t=2s" target="_blank">Extended interview: Rita Winkeler</a><br /></span></span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">Disability rights advocate Rita Winkeler is a critic of taxpayer-funded group homes, licensed by Illinois and run by private organizations. The homes are for people with intellectual and developmental disabilities, designed to better integrate them into society.</span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-59612932485587131612023-09-01T10:30:00.006-04:002023-09-01T11:41:44.055-04:00"When He Outgrew Cute..." by Jess Ronne<p><span style="font-family: arial; font-size: medium;">Here is a moving poem by Jess Ronne from the <a href="https://vor.net/" target="_blank">VOR</a> (Voice Of Reason) FaceBook page:</span></p><p><span style="font-family: arial; font-size: medium;"><br /><a href=" https://www.facebook.com/photo/?fbid=689785439632666&set=a.152505223360693" target="_blank">When He Outgrew Cute</a>. <br /><br />When he outgrew cute<br />The looks changed from compassion to concerned<br />Towards him<br />And towards those who supported him.<br />And sometimes disgust<br />Overshadowed concern<br />As he stubbornly clung to his ways.<br /><br />When he outgrew cute<br />The calls increased<br />Calls desperate for help<br />Desperate for summer options for a fifteen-year-old in briefs<br />Desperate for respite<br />Desperate for adaptive equipment<br />Desperate for anything that would assist a non-verbal child<br />Or anyone<br />And the voices were silent<br />Or they whispered –<br />Sorry.<br />Sorry.<br />Sorry.<br /><br />When he outgrew cute<br />His movements were no longer celebrated<br />But instead feared<br />Violent head banging<br />Aggressive pulling<br />Dangerous optimism<br />With the strength of a man<br />And not that of a child.<br /><br />When he outgrew cute<br />The damage began<br />Damage to walls<br />Damage to others<br />And damage to himself<br />And this damage<br />Wreaked havoc on more than just objects <br />It wreaked havoc on psyches as well.<br /><br />When he outgrew cute<br />The walls caved in<br />And the house became a tomb<br />And the isolation suffocated those within<br />As they desperately yearned to belong<br />To something<br />Somewhere.<br /><br />When he outgrew cute<br />Milestones were no longer encouraged<br />And his future grew dim<br />And symptoms of PTSD set in<br />For those who loved him <br />And had been rattled by his screams for years.<br /><br />When he outgrew cute<br />Mood altering drugs were doled out like candy<br />One option after another<br />For him<br />And also –<br />Suggested for his caregivers.<br />Drugs to dull the pain<br />Drugs to pacify<br />Drugs to silence the demons.<br /><br />When he outgrew cute<br />She outgrew herself<br />As every ounce of strength was poured into him<br />And she got lost in the daily grind<br />Lost in the sleepless nights<br />And invisible behind the never-ending tasks.<br /><br />When he outgrew cute<br />She outgrew silence<br />And she raised her voice<br />To join the cacophony for change<br />And her battle cry rose –<br />A better tomorrow!<br />For him<br />And for those who loved him.<br />Because when he outgrew cute<br />He outgrew society<br />And that’s simply not an option.<br />For anyone.<br />Anymore.<br /><br />When he outgrew cute<br />She found the strength to move forward<br />To move toward advocacy<br />And move toward hope.<br />She found the strength<br />To keep going<br />And keep growing<br />And she found the strength<br />To just keep livin<br /><br />Written by Jess Ronne</span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-60969867768742982852023-07-24T10:44:00.003-04:002023-07-24T10:52:06.819-04:00Michigan: The tuition-free community college program, Michigan Reconnect, has been expanded to students 21 and older<p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOvD3__INqY2tHxB4Fmi1IqvmJr-0bSwJEYDCezzJ5GwduFee2IK5UE_Q8L4nXEbqb9NZy_q8f-JFygn1PVDJik4ZlrE-47lt4wwE9Am742hL89QJOv5GzkFW1GqxxtMruF_pzLkhhx56TSAHoPLF29Swhp90_YHbhc1ElXL-s82ptwYYoRnMviyWcT1Y/s2645/23%2006%20sunset.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2501" data-original-width="2645" height="189" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOvD3__INqY2tHxB4Fmi1IqvmJr-0bSwJEYDCezzJ5GwduFee2IK5UE_Q8L4nXEbqb9NZy_q8f-JFygn1PVDJik4ZlrE-47lt4wwE9Am742hL89QJOv5GzkFW1GqxxtMruF_pzLkhhx56TSAHoPLF29Swhp90_YHbhc1ElXL-s82ptwYYoRnMviyWcT1Y/w200-h189/23%2006%20sunset.jpeg" width="200" /></a></span></div><span style="font-size: medium;"><i><span style="font-family: arial;">With a shortage of workers in many professions affecting people with disabilities, especially fields related to health care and education, the Michigan Community College system could help fill in the gaps. For at least this year, the Michigan budget will allow an additional 350,000 Michiganders to take advantage of tuition-free college.</span></i><span style="font-family: arial;"><br /></span></span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">*****************<br />According to an article in the Detroit Free Press, “<a href="https://www.freep.com/story/news/education/2023/07/24/michigan-budget-expands-tuition-free-community-college-reconnect/70436587007/" target="_blank">Michigan budget expands</a> tuition-free community college program for more residents” by Arpan Lobo, 7/24/23, “…the 2023-24 fiscal year budget expands the Michigan Reconnect program to residents 21 and older. “ <br /><br />“…Lawmakers have earmarked an additional $70 million in the proposed budget heading to Gov. Gretchen Whitmer’s desk for the Reconnect program, but the funds are a one-time allocation. The program, launched in 2021, has provided scholarships for qualifying Michigan residents 25 and older without postsecondary degrees or certifications to attend an in-district community college or tribal college tuition-free, or cover the in-district rate for students attending a school outside of their resident district. The state also offers a Short-Term Training Program to cover up to $1,500 in tuition costs for skills training programs with similar eligibility guidelines.”<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">This is part of the Whitmer administration’s “Sixty by 30” goal of having 60% of Michigan residents obtain a college degree or skills certification by 2030. According to Lt. Gov. </span></span><span style="font-family: arial;"><span style="font-size: medium;">Garlin Gilchrist, </span></span><span style="font-family: arial;"><span style="font-size: medium;">about 50.5% of residents have either education level currently.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The Michigan Reconnect scholarship program is currently open to students 25 and older. “The spending plan was bolstered by a $9.2 billion surplus in the state’s coffers thanks to increased federal funding in the wake of the coronavirus pandemic, as well as boosted infrastructure spending by the feds” and will be used to include students 21 and older.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Community colleges allow people who may not be interested in or able to afford obtaining degrees available in 4-year colleges, but need 2-year associate degrees or a certification program to improve their employment opportunities. The legislature is currently looking at ways to permanently fund this program. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Offerings at our local community college, Washtenaw Community College (<a href="https://www.wccnet.edu/" target="_blank">WCC</a>), include programs in nursing, physical therapy, and early childhood education. I'm sure there are many more that can be explored on the website.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>See the Michigan Reconnect Program website to apply</b> </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i><u><a href="https://www.michigan.gov/reconnect/community-college" target="_blank">From the website</a>: </u><br /></i></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">If you’re 25 or older [21 or older for this fiscal year], and you’ve been thinking about going back to school to pursue your associate degree or a skills certificate, now might be the time. This page has tools to help you apply for Michigan Reconnect, find your in-district community college, and more.<br />To be eligible, you must:</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"> • Be at least 25 years old when you apply [21 or older this year]<br /> • Have lived in Michigan for a year or more<br /> • Have a high school diploma or equivalent<br /> • Have not yet completed a college degree (associate or bachelor's)<br /><br />If you do not have a high school diploma or equivalent, visit <a href="http://Michigan.gov/LearnMoreEarnMore">Michigan.gov/LearnMoreEarnMore</a> to get started. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Michigan Reconnect provides free in-district tuition, mandatory fees, and contact hours for accepted and eligible applicants to pursue a Pell-eligible associate degree or skill certificate at any of Michigan's public community colleges. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Have questions before you apply? Visit our <a href="https://www.michigan.gov/reconnect/community-college/faqs" target="_blank">Frequently Asked Questions</a> to learn more about the program and what it offers.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">************************* <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><i>This is an article from the Detroit Free Press on more opportunities for free tuition from the Michigan university system: “<a href="https://www.freep.com/story/news/local/michigan/2023/03/15/how-to-access-free-tuition-at-michigan-colleges/70008347007/" target="_blank">How to access free tuition at Michigan colleges</a>” by Jenna Prestininzi, 3/15/23.</i></span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-19547567051260054362023-07-10T07:44:00.001-04:002023-07-10T07:44:07.274-04:00Michigan: New Housing Community for adults with I/DD in Washtenaw County<p><span style="font-size: medium;"><span style="font-family: arial;"><i><span style="color: #cc0000;">Meeting tonight, 7/10/23: "Did you know a NEW housing community for adults with intellectual and
developmental disabilities is being built in Washtenaw County?" </span></i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><i>***************<br /></i></span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;"><b>From Kerry at <a href="https://manyhandslc.org/" target="_blank">Many Hands</a></b> LC <<a href="mailto:kerry@manyhandslc.org">kerry@manyhandslc.org</a>></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">A Place for Living & Learning for the Disability Community! </span></span></p><p style="text-align: left;"><b><span style="font-family: arial;"><span style="font-size: medium;">Monday July 10 from 6:30-7:30 at WISD’s Teaching and Learning Center, 1819 South Wagner Rd., Ann Arbor.</span></span><span style="font-family: arial;"><span style="font-size: medium;"> <br /></span></span></b></p><p><span style="font-family: arial;"><span style="font-size: medium;">We are looking forward to seeing you tomorrow, Monday July 10 from 6:30-7:30 at WISD’s Teaching and Learning Center, 1819 South Wagner Rd., Ann Arbor.<br />In person is best, if time allows we will be going to the land in Dexter. <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Zoom link</b>: https://us06web.zoom.us/j/86964357976?pwd=RnZpQmJveWN6NmhoZG9zb3FtVjkwZz09 Passcode995254<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Did you know a NEW housing community for adults with intellectual and developmental disabilities is being built in Washtenaw County?<br /><br />Many Hands Lifesharing Community envisions adults with developmental disabilities, their families and caregivers living full, healthy and meaningful lives connected to others.<br /><br />We are creating an amazing place to live and learn, regardless of ability!<br /><br />A UNIQUE IMPACT ON OUR COMMUNITY:<br /><br />In addition to providing residents and their caregivers with a wonderful place to live,<br />the larger disability community will be welcomed onto campus to help fill a large gap in need for on-going learning and leisure activities.<br /><br />SOME OF THE PLANS AND PROGRESS YOU’LL HEAR ABOUT on JULY 10:<br /><br />The 85 scenic acres under contract on Baker Road on the outskirts of Dexter, and An Angel donor has committed almost 2 million dollars to purchase the land!</span></span></p><ul style="text-align: left;"><li><span style="font-family: arial;"><span style="font-size: medium;">Plans underway for a fully accessible, sustainable community with family-style homes for residents and caregivers</span></span></li><li><span style="font-family: arial;"><span style="font-size: medium;">Quality of Life, Lifelong Learning and Community Connectedness...through walking trails, a craft house, gymnasium, performing arts center and a cafe (that will welcome the public!) </span></span></li><li><span style="font-family: arial;"><span style="font-size: medium;">The organic regenerative farm (with animals!) for meaningful resident activities, and engagement opportunities for the greater community</span></span></li></ul><p><span style="font-family: arial;"><span style="font-size: medium;">__________________________________________________________________<br /><br />We hope you’ll join us!<br />Monday, July 10 @ 6:30pm<br />WISD’s Teaching and Learning Center<br />1819 South Wagner Rd., Ann Arbor, MI 48103<br />Vogel Rooms A & B<br /><br />__________________________________________________________________<br /><br />Kerry Kafafian<br />Board Chair for Many Hands Lifesharing Community<br />734-355-0991<br />Kerry@ManyHandsLC.org<br />www.ManyHandsLC.org<br /><br /></span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-23970272418562597392023-06-13T14:30:00.009-04:002023-06-13T14:35:40.937-04:002023 Disability Policy Webinar Series from the ARC Michigan<p><span style="font-family: arial;"><span style="font-size: medium;"></span></span></p><div class="separator" style="clear: both; text-align: center;"><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijKUkOD-EV_n2vqqn4PkpcWQUSo3BkAYrRg6cj5YwYwxXvQwaBRuWRRdoKhS6YVLC3FSeez11Nbg2JbnBJqYak74kXXd5h4eZqrnAdmFABBLC_7eN2mbpw0_EUY8v2mImjA4Au0pk_-3jmrzdf--oKJC111iURmdgAYEeYBmaqmWFAEJP34ERRyppY/s2604/21%2006%20swallowtail.jpeg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2202" data-original-width="2604" height="169" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijKUkOD-EV_n2vqqn4PkpcWQUSo3BkAYrRg6cj5YwYwxXvQwaBRuWRRdoKhS6YVLC3FSeez11Nbg2JbnBJqYak74kXXd5h4eZqrnAdmFABBLC_7eN2mbpw0_EUY8v2mImjA4Au0pk_-3jmrzdf--oKJC111iURmdgAYEeYBmaqmWFAEJP34ERRyppY/w200-h169/21%2006%20swallowtail.jpeg" width="200" /></a></span></div><span style="font-family: arial; font-size: medium;">The <a href="http://arcmi.org/" target="_blank">ARC Michigan</a> is sponsoring a two-part Webinar on <a href="https://arcmi.org/2023policywebinar/" target="_blank"><b>Disability Policy 2023</b></a>. The first session was held on June 9, 2023. The second session is scheduled for Friday, June 16, 2023. A recording of the Webinar and written handouts are available for the first session. A recording and handouts for the second session will be available after Friday, 6/16/23.</span><p></p><p><span style="font-family: arial;"><span style="font-size: medium;">During the first session, Emily Henderson, Government Affairs Consultant, gave a broad overview of state issues and a rundown of who is who in state government. David Goldfarb covered federal policy and issues regarding Long-Term Supports and Services. The second session focuses more on Home and Community Based Services and the federal settings rule.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Although I disagree with some of the policies that the ARC Michigan promotes, I found the Webinar to have plenty of useful information and food for thought. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>June 9, 2023</b><br /><u>9:00am – 10:00am<br /></u></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Emily Henderson, </b> Government Affairs Consultant<br />McCall Hamilton Advocacy & Public Affairs</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Emily Henderson is a government affairs consultant at McCall Hamilton, Lansing’s only all-female lobbying firm. Following graduation from Michigan State University’s James Madison College, Emily joined the team and began working closely on state legislative and regulatory health and human services issues as well as grassroots and coalition advocacy.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">In this presentation, Emily will discuss Michigan’s new political landscape and provide an advocacy update on all of the items the Arc Michigan is following in Lansing. Emily will also share what it means to be an effective advocate and how to connect with your legislators.<br /> <br /><u>10:30am – 11:30am</u><br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>David Goldfarb</b> , Director of Long-Term Supports and Services Policy<br />The Arc of the United States<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">David Goldfarb is The Arc of the United States’ Director of Long-Term Supports and Services Policy. Prior to joining The Arc, he spent nearly 8 years at the National Academy of Elder Law Attorn eys (NAELA), where he oversaw NAELA’s advocacy initiatives. He currently co-chairs the Disability and Aging Collaborative and the Consortium for Constituents with Disabilities (CCD) Financial Security & Poverty Task Force. He began his public policy career as the Economic Policy Fellow for Senator Bill Nelson of Florida.<br /> <br /><b>June 16, 2023</b><br /><u>9:00am – 10:00am</u><br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Belinda Hawks, </b> Director of Home and Community Based Services<br />& <b>Lyndia Deromedi </b>, Manager of Federal Compliance Section, Division of Adult Home & Community Based Services, Behavioral and Physical Health and Aging Services Administration </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Belinda Hawks has given 30 years to working in the Michigan Behavioral Health system as a provider of services, in a community mental health organization, and the last 9 years at the state in the Bureau of Specialty Behavioral Health Services.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">She will provide us with updates from MDHHS – Behavioral Health on Conflict Free Access and Planning and Implementation of the Home and Community Based Services Rule.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Lyndia Deromedi</b> is the manager of the Federal Compliance Section in the Adult Home and Community Based Services Division and has been in this role for almost 3 years.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">The Federal Compliance Section oversees the Habilitation Supports Waiver [for people with developmental disabilities] and 1915(i)SPA services for adults receiving Medicaid behavioral health services. This includes the oversight of the site review process, person-centered planning, self-determination and the Behavioral Health Home and Community Based Services (HCBS) rule implementation. Lyndia has been working in the Michigan behavioral health system for over 25 years.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Lyndia will provide an update of the HCBS rule implementation for behavioral health services in Michigan.<br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><a href="https://www.michigan.gov/mdhhs/assistance-programs/healthcare/hifa/home-and-community-based-services-program-transition" target="_blank">Click Here for more information on Home and Community-Based Services Program Transition</a><br /> <br /><u>10:30am – 11:30am</u></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Lindsay McLaughlin & Phillip Kurdunowicz</b><br />Bureau of Children’s Coordinated Health Policy & Supports, Behavioral and Physical Health and Aging Services Administration</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Links to Webinar recordings and written materials are <a href="https://arcmi.org/2023policywebinar/" target="_blank">here</a>. </b></span></span><br /></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-88018050180187022712023-06-11T09:35:00.033-04:002023-06-11T10:23:32.673-04:00WOW! Michigan increases dental benefits for adult Medicaid recipients!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCyGc_qlJT0vH1NpI-aGeqqNbq8ks7MH1RTpZ8Rk_wpl9QwZjwxDPi2r8mn5Jc1dJuJgz0BW59ss0Lm6bWriXHZvI3AVuoYOEkhaOyVw7tUYJ-2KT1ZF5mWWXRI98z3hKrAAhnxW5M3bQCq4uAbZPpu2BH2Q1YDGlhHRMzz779ET-9bT_Y7QY-psq/s640/16%2006%20sky%20blue.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCyGc_qlJT0vH1NpI-aGeqqNbq8ks7MH1RTpZ8Rk_wpl9QwZjwxDPi2r8mn5Jc1dJuJgz0BW59ss0Lm6bWriXHZvI3AVuoYOEkhaOyVw7tUYJ-2KT1ZF5mWWXRI98z3hKrAAhnxW5M3bQCq4uAbZPpu2BH2Q1YDGlhHRMzz779ET-9bT_Y7QY-psq/w200-h150/16%2006%20sky%20blue.jpg" width="200" /></a></div><span style="font-family: arial; font-size: medium;">This is from the <a href="https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2023/04/03/medicaid-dental-redesign" target="_blank">Michigan Department of Health and Human Services</a>: As of 4/1/2023, the State has expanded dental services and now reimburses dentists at 100% of the Average Commercial Rate for Medicaid beneficiaries</span><p><span style="font-family: arial; font-size: medium;">I missed this. My son Danny, who passed away last October, was most in need of this. As his seizures increased and other disabilities became more debilitating for him, his safety </span><span style="font-family: arial; font-size: medium;">outside of a hospital setting</span><span style="font-family: arial; font-size: medium;"> could no longer be assured. For a number of years, I was so disgusted by the Medicaid dental care that was available to him that he went without. I don't think he ever had a cavity and there was no indication that he was having dental problems, but he required sedation for his teeth to be examined and X-rayed. The Medicaid provider was not willing to do this without putting us through a long period of proving he needed sedation and making us wait for extremely long periods of time for appointments. My son Ian, on the other hand, is surprisingly amenable to having a private dentist and dental hygienists clean his teeth, do X-rays, fill cavities, etc. </span><br /></p><p><span style="font-family: arial;"><span style="font-size: medium;">I'm sure it will take time for this to have full effect, especially in persuading dentists to take on difficult-to-care-for patients with disabilities, but it is very encouraging.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">********************** <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b><span style="color: #cc0000;"><a href="https://www.michigan.gov/mdhhs/inside-mdhhs/newsroom/2023/04/03/medicaid-dental-redesign" target="_blank">MDHHS expands dental benefits for Medicaid beneficiaries</a></span></b><br />April 03, 2023 <br /></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">To improve access to dental services, the Michigan Department of Health and Human Services (MDHHS) has expanded dental benefits for adult Medicaid beneficiaries and increased rates for dental providers. This redesigned benefit will directly help beneficiaries by increasing access to services, enhancing care coordination and improving health outcomes. Benefit enhancements and service delivery began April 1.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“This positive change recognizes the strong correlation between oral and physical health outcomes,” said Elizabeth Hertel, MDHHS director. “With better services and closer care coordination, we can maximize opportunities to create healthy outcomes for beneficiaries of all ages while also expanding the number of providers so Michigan’s residents can get care where and when they need it.” </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>The $85.1 million investment in increased reimbursement and $30 million in redesigned benefits will not result in any loss of services, and many recipients will have new services added.</b> For beneficiaries who are 21 years and older, the following services will now be covered:</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"> • X-rays<br /> • Teeth cleanings<br /> • Fillings<br /> • Extractions<br /> • Dentures<br /> • Deep teeth cleanings (New)<br /> • Sealants (New)<br /> • Root canals (New)<br /> • Crowns (New)<br /> • Care to keep your gums healthy (New)<br /> <br />Changes reflect input from a broad array of stakeholders and lessons learned from the Healthy Michigan Plan and Pregnant Women dental programs. In addition to the expanded services, MDHHS has made changes to improve beneficiary access and provider participation, as well as expand access to robust care coordination services that ensure beneficiaries are supported in accessing the services they need. </span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">As a first step in the redesign, a policy that substantially increased reimbursement rates for Medicaid dental services was implemented Jan. 1, 2023. <b>Providers are now being paid at 100% of the Average Commercial Rate, ensuring access and incentivizing providers to treat Medicaid beneficiaries.</b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">“The reimbursement rates for providers were very low under the old adult dental Medicaid program,” said Dr. Vince Benivegna, President of the Michigan Dental Association. “Dentists would lose money by treating adult dental Medicaid patients. As small business owners this was not sustainable. The new rates recognize the value of quality care and will allow more dental health providers to treat Medicaid patients.”</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>Medicaid beneficiaries will not lose any dental care benefits with these changes</b>; however, the way services are delivered may change slightly. Medicaid beneficiaries aged 21 years and older, including Healthy Michigan Plan beneficiaries and pregnant women who are enrolled in a Medicaid Health Plan, Integrated Care Organization or Program of All-Inclusive Care for the Elderly will receive dental benefits through their health plan. The health plan becomes responsible for the beneficiary’s dental services obtained through the health plan’s dental provider network. The health plans will continue to provide robust care coordination and ensure that beneficiaries are supported in accessing the services they need.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Dental services for beneficiaries who are not enrolled in a health plan will be provided through the Medicaid FFS program.</span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;"><b>For questions, beneficiaries can call the Beneficiary Help Line for free at 800-642-3195 (TTY: 866-501-5656) or send an email to <a href="mailto:beneficiarysupport@michigan.gov">beneficiarysupport@michigan.gov</a>.</b></span></span></p><p><span style="font-family: arial;"><span style="font-size: medium;">Providers can call 800-292-2550 or email <a href="mailto:providersupport@michigan.gov">providersupport@michigan.gov</a>.</span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0tag:blogger.com,1999:blog-4411374816740853749.post-7219556066025561392023-06-08T09:34:00.007-04:002023-06-11T09:36:59.160-04:00Canadian wildfires cause breathing problems in Michigan<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6dQOx8oYOzJ3pSUQ-PtVo_6TIyDF6BQu-ogjmZR0lWwiEhX7ODILFCnjdImPLEqgsjOOSGZWbqjrRqh-zxUBuqOOmSPEZoruL2633ZFP15D9PFQutJ93fQ0cIOSJEY17QjhqARtXdnHWWTAo7da4fOoJ8rNmvNld0-3tLdxTER3D1uU4VmpFBS9Ci/s640/15%2006%20Catalpa.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="619" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6dQOx8oYOzJ3pSUQ-PtVo_6TIyDF6BQu-ogjmZR0lWwiEhX7ODILFCnjdImPLEqgsjOOSGZWbqjrRqh-zxUBuqOOmSPEZoruL2633ZFP15D9PFQutJ93fQ0cIOSJEY17QjhqARtXdnHWWTAo7da4fOoJ8rNmvNld0-3tLdxTER3D1uU4VmpFBS9Ci/w194-h200/15%2006%20Catalpa.jpg" width="194" /></a></div><span style="font-family: arial;"><span style="font-size: medium;">I am jumping in here after too many months of silence on my blog with a report on poor air quality in Southeast Michigan. This is one of those issues that can leave people with disabilities and their families especially vulnerable to bad health effects. The Detroit Free Press covers this story in an article by Christina Hall, "<a href="https://www.freep.com/story/news/local/michigan/2023/06/07/canadian-wildfires-smoke-detroit-michigan-air-quality-health-breathing/70298034007/" target="_blank">Smoke from Canadian wildfires creates respiratory hazards for southeast Michigan residents</a>", 6/7/23. The article includes a survey of local health systems that are experiencing increases in emergency department visits along with expert advice on how to avoid the worst health outcomes from poor air quality:</span></span><br /><p></p><p><span style="font-size: medium;"><span style="font-family: arial;">"Dr. Lawrence MacDonald, chief of pulmonary medicine at DMC Huron Valley-Sinai Hospital in Commerce Township, said most people shouldn’t be affected because their body can handle added dust or allergens in the air.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"However, these air conditions can exacerbate respiratory issues, especially asthma or chronic obstructive pulmonary disease.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"'You can end up sick. You can end up wheezing and coughing and short of breath. If you’re sick to begin with, you could end up in the hospital. So, the best therapy would be it’s always best to avoid things that trigger lung disease,' MacDonald said." </span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">...</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">"The Southeast Michigan Council of Governments recommends people and businesses do what they can when high levels of ozone are expected, because breathing high concentrations of ozone can cause health problems, particularly for elderly people, children and people with asthma or other respiratory issues."</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">Here are SEMCOG's recommendations:</span></span></p><ul style="text-align: left;"><li><span style="font-size: medium;"><span style="font-family: arial;">Delay mowing lawn until evening or the next day.</span></span></li><li><span style="font-size: medium;"><span style="font-family: arial;">Avoid refueling your vehicle during daylight hours.</span></span></li><li><span style="font-size: medium;"><span style="font-family: arial;">Drive less, telecommute, bike or walk.</span></span></li><li><span style="font-size: medium;"><span style="font-family: arial;">Delay or combine errands to reduce traffic congestion and air pollution.</span></span></li><li><span style="font-size: medium;"><span style="font-family: arial;">Reduce electricity use. Adjust your thermostat a few degrees higher and turn off lights, computers and other electrical devices when not in use. </span></span></li></ul><p><span style="font-size: medium;"><span style="font-family: arial;">Another piece of advice from the CDC (<a href="https://www.cdc.gov/disasters/wildfires/smoke.html?utm_source=substack&utm_medium=email#:~:text=Wildfire%20smoke%20can%20harm%20you,are%20exposed%20to%20wildfire%20smoke." target="_blank">U.S. Centers for Disease Control and Prevention</a>) is to wear an N95 mask, as recent research found those masks reduced hospitalizations from wildfire smoke by 30%.</span></span></p><p><span style="font-size: medium;"><span style="font-family: arial;">I will not point out the irony of opponents of mask-use during the COVID pandemic, who, because of their own health vulnerabilities, are donning masks and staying indoors, except to assure everyone that these warnings are not a hoax!</span></span></p>Jill Barkerhttp://www.blogger.com/profile/00976558739433548844noreply@blogger.com0