News
Meet Dennis Granzen. He has the unique perspective of being on both sideshe was an avid supporter and advocate for people with disabilities, but then he found himself needing support. Having this perspective has helped him understand the importance of self-determination and advocacy. We are so fortunate to have him as a member of the Self-Determination Network!
How are you involved with self-directed supports and self-determination? Why did you join the SDNetwork?
After almost twenty years working as a supporter and advocate for people with disabilities Dennis acquired that label myself, he says. His work had been with individuals, small groups and large groups of people of all ages, from four year olds to older adults, and included their families and friends. We focused on community inclusion, focusing on how people could share their gifts and abilities with those around them, he explains.
In relation to self-determination, this meant helping people create a vision of what they wanted their life to look like, and then coming up with a plan that reflected the vision. He explains that, most of these people were either teens transitioning to adulthood, or older adults trying to find a way to fit disability into their lives. After several difficult life events, he came to fit into the second category. He says that, at this time, I dont yet need formal in home supports those are performed by my wonderful family. Right now, most of his self-advocacy efforts center around doctors and other health care providers.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination or Self-Directed Supports?
Dennis feels that Wisconsins model to have Self Determined Supports is positive and respectful, but he says, we have to be vigilant in making sure we dont lose it to the ever shifting bureaucracy. He points out thats one of the reasons why joined the Self-Determination Network.
What tip or resource would you like to share with people who want to direct their own supports, or who would want to be more self-determined?
After attempting to teach self-advocacy to others and then finding he needed to practice it for himself, Dennis found it harder to do than to talk about. He says, taking the time to stay calm and think through your thoughts means avoiding the urge, and expectation, to know and share the answers right away. He points out that it means accepting that things may get a little messy--maybe very messy-- before order is restored.
What message would you like to share with themembersof the SDNetwork?
One important thing Dennis has found helpful is that he does better when he involves others in his decision making. A trusted family member or friend goes a long way to making decisions that are thought through and better reflect my values, he explains. He points out that if these people respect and listen to him, the resulting decision is still his--and he feels stronger acting on and sticking to it.
What's your dream vacation?
Dennis dream vacation would be to go with his wife, older son and his girlfriend and travel to New York City to stay a week checking out the music scene. His younger son lives in Brooklyn and is studying drums and percussion at The New School for Jazz and Contemporary Music. I then would go on with just my wife to Sanibel Island, Florida for a week to explore the sun, sand, shells and surf, he adds.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
Change is hard on everyone. People say transitions are harder on adults. I have heard that change is even harder for people with disabilities. Maybe its because Im older or maybe its just me, but over the last couple months, Ive realized just how true these statements are.
Ive shared that Ive been an IRIS participant for over six years now. I love being able to self-direct my budget and make choices about my life. In fact, I believe everyone should have the option to self-direct. When I was living with my parents in Fond du Lac after college, we tried to find care agencies that would bill Medical Assistance for personal cares. As I explained in a previous journal entry, that didnt work. Agencies could not staff my shifts. My IRIS consultant at the time suggested I switch to Self-Directed Personal Care (SDPC), so I could hire my own staff. There was a waiting list for it, and by the time I got on it, we had heard that an apartment had become available in Oshkosh. I didnt realize it at the time, but we were very fortunate that the care agency associated with the apartments billed SDPC. So, until I moved in, I just hired my parents to do my personal cares (they obviously had been doing them anyway).
Things had been going so well with the care agency for four and a half years. Sure, there were ups and downs and bumps in the road, but, overall, it had been going very well. Over the last year or so, my IRIS consultant and nurse had been telling me that changes to SDPC and that we may have to make some changes. The change was that SDPC was no longer going to allow third party vendorsthey were only going to allow people to hire their own staff. I knew this wasnt a feasible option for me, but I wasnt too concerned because I thought the agency I had was a Medical Assistance provider. So, when I got a letter in the beginning of July saying this was indeed true and that I had until October 15th to make the switch, I wasnt overly concerned as I thought I could just switch back to Medical Assistance for personal cares and keep my agency. I setup a meeting with my agency and my IRIS consultant and nurse for mid-July. This was when we found out that the agency wasnt a Medical Assistance provider.
This meant I either had to find my own staff or find a care agency that billed Medical Assistance. Unlike many other IRIS participants, I dont ever want to hire family and friends to be my primary caretakers. It just doesnt sit right with me. For some, its a great option, but thats not the case for me. I also know I could hire out myself by advertising in places such as newspapers and online, because of the amount of hours I need and various other factors, this isnt a feasible option for me. Therefore, I had to find an agency that billed Medical Assistance.
Thankfully, right after the meeting in July, my parents and I got on the ball right away and setup an interview with an agency that was a Medical Assistance provider. We met with them in late July. It was decided Id go with this agency. The agency had to hire multiple people to cover my shifts, so we knew itd take awhile to setup. After many stressful weeks trying to figure out what was going on, I finally started with the new agency last week.
Most people don't understand the gravity of changing agencies has on me, but it's truly life-changing for me. I kept asking my mom how I ever started at UW-Whitewater. She said, "Stac, you had no idea what you were in for," and she's exactly right! Switching care agencies means starting over with all new people and learning a whole new set of rules. Care agencies try to prevent clients and workers from becoming friends because its not ethically correct, but its almost impossible not to become friends with the people taking care of you. Theres a certain trust factor when it comes to personal cares. I have to get to know and train all new people. This is not an easy task for anyone, but its especially hard when youre non-verbal. I typed out detailed instructions for each care shift, but even with those, I have to get used to each new person and vice versa. Its pretty stressful and exhausting!
The change not only affected my life; it affected my parents life as well. They had an out-of-state trip planned in October. Since I was going to be with a new care agency, my mom and dad didnt feel comfortable leaving me behind. Originally, I was going to go with them, but, as the start date got pushed further and further back, we realized that cancelling cares for over a week right away probably wasnt the best idea. In the end, my parents decided to stay closer to home in case Id need anything. Im grateful for their sacrifice.
While personally I dont understand or agree with the third party vendor rule (I dont know how limiting who we can hire is self-direction), Ive accepted it and moved forward. Change, whether its big or small, isnt easy for anyone. We have to learn to adapt and move forward one step at a time!
The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
This is a great article in Disability Scoopwritten by Michelle Diament about how wage protections for caregivers are finally set to take effect. She explains that there has been a lot of controversy over this, but the rule is set to take effect October 13th. The new rule states that "home care workers must be paid at least the federal minimum of $7.25 per hour and earn time-and-a-half for working more than 40 hours per week."
Long-Delayed Caregiver Wage Protections To Take Effect
By Michelle Diament
The U.S. Supreme Court has paved the way for an Obama administration rule mandating minimum wage and overtime for in-home caregivers assisting those with disabilities to be implemented.
Chief Justice John Roberts issued an order Tuesday denying a request from industry groups who sought to delay the new rule.
Under the2013 rulefrom the U.S. Department of Labor, most home care workers must be paid at least the federal minimum of $7.25 per hour and earn time-and-a-half for working more than 40 hours per week.
Previously, under a law dating to the 1970s, caregivers were classified similarly to baby sitters and were not entitled to the same rights as other types of employees.
Trade groups representing agencies that employ many home care workers sued over the changes arguing that the pay hike would make such care unaffordable.
Initially, the new requirements were set to take effect in January, but they were put on hold when a federal judgeruledthat the Labor Department had overstepped its authority. On appeal, however, a three-judge panelsidedwith the Obama administration.
Last month, the groups challenging the rule asked the Supreme Court to postpone implementation of the changes so that they could further appeal the decision. With Roberts order Tuesday, however, the rule is set to take effect Oct. 13.
We are pleased with todays order, U.S. Secretary of Labor Tom Perez said late Tuesday. The final rule is not only legally sound; it was the right thing to do. It will ensure fair wages for the nearly 2 million home care workers who provide critical services, and it will help ensure a stable and professional workforce for people who need those services.
The Labor Department said it will not begin enforcement of the new rule until Nov. 12 and will use prosecutorial discretion through the end of the year to assess whether to bring enforcement actions based on how much effort states and other relevant entities have put toward ensuring compliance.
Source:http://www.disabilityscoop.com/2015/10/07/long-delayed-caregiver-effect/20859/
DISABILITY SCOOP: Ranking Names Most Livable Cities For People With Disabilities
By SD Network, 2015-10-08
This is an interesting article inDisability Scoopwritten by Shaun Heasley about a new ranking that list the best and worst cities for people with disabilities. While none of the top or bottom cities are in Wisconsin, it's still interesting to see which cities made the list. It's also interesting to read about some of the factors used to determine the ranking..
Ranking Names Most Livable Cities For People With Disabilities
By Shaun Heasley
A newrankingcrunches the numbers to assess the nations best and worst cities for those with disabilities.
The analysis from the consumer finance website WalletHub compares the countrys 150 most populated cities using 21 different metrics designed to evaluate cost of living, quality of life and access to health care.
Overland Park, Kan. comes in at number one on the list followed by Scottsdale and Peoria, Ariz., Tampa and St. Petersburg, Fla.
Rounding out the bottom five are Worcester, Mass., Moreno Valley and San Bernardino, Calif., Jersey City, N.J. and Providence, R.I.
The analysis gave extra weight to factors including each locales employment rate, poverty level and median earnings specific to people with disabilities. Other considerations included housing affordability, cost of in-home care services, walkability and the availability of doctors and special-education teachers.
WalletHub said the ranking is meant to identify the cities with the most suitable living conditions for people with disabilities.
Source: http://www.disabilityscoop.com/2015/10/01/ranking-livable-disabilities/20842/
This is a great article in theWisconsin State Journalwritten by Jill Carlson about VSA Wisconsin (the State Organization on Arts and Disability). She explains what VSA does and how it got started in Wisconsin. This sounds like a great organization for people with disabilities.
Defining individuals by ability, not disability
By Jill Carlson
VSA Wisconsin conducts arts programming for people with disabilities in more than 20 locations throughout Wisconsin. Field offices are strategically located in Madison and Milwaukee to benefit the nearly 1,900 people who use the services.
Thirty years ago, students with disabilities were educated in self-contained classrooms and many individuals with disabilities were institutionalized.
We have learned so much since then and educating students with disabilities is now a much broader field, especially since the passage of the Americans with Disabilities Act in 1990, said Kathie Wagner, VSA Wisconsin president.
VSA Wisconsin embraced the integration of people with disabilities into classrooms alongside typically developing peers. The majority of VSA programing is done at early learning centers, schools and organizations that provide day services to people with disabilities.
VSA Wisconsin is a member of the VSA Affiliate Network, a program of the John F. Kennedy Center for the Performing Arts in Washington, D.C. The organization was founded by Jean Kennedy Smith in 1974 and was originally called the National Committee, Arts for the Handicapped (NCAH). Renamed Very Special Arts in 1985, VSA in 1998 and VSA arts in 1999, the international organization is dedicated to enriching the lives of children and adults with disabilities by providing opportunities in the arts.
Many volunteers from across Wisconsin helped launch the state organization. Individuals from the Madison area that were part of that effort include Mary Ann Shaw, Bob Brennan, Herbert Grover, Mike George, Sue Ann Thompson and Mike Leckrone. Kay Lindblade was hired as the first executive director and led the organization for 15 years.
The participants served by VSA Wisconsin range in age from 3 years old to the senior population.
Participants cross all disability categories including physical cerebral palsy, spinal bifida, muscular dystrophy, visual, speech or hearing impairment, epilepsy, mental emotional and behavioral and cognitive disabilities such as autism, ADHD, Down syndrome, Fragile X, brain injury and other developmental disabilities.
The first Very Special Arts Festival in Wisconsin took place at the Milwaukee Art Center in l977 prior to incorporation.
This festival was one of only 27 pilot sites selected for festivals in 1977 by the National Committee, Arts for the Handicapped. Between l977 and l984 festivals were held in cities including Racine, Kenosha, Milwaukee, Wausau and Sheboygan.
VSA Wisconsin opened an art gallery in Madison in 2011 that enables artists with disabilities to sell their artwork and get public recognition.
VSA Wisconsin also operates a booth at Madisons annual Art Fair on the Square each summer. Artists receive 70 percent of the sales proceeds to encourage continued artmaking efforts.
Disability awareness training and professional development for artists, educators and cultural venues are other services provided by VSA Wisconsin.
The creative arts are a universal language and have the ability to level the playing field and change lives, socially, academically and vocationally, Wagner explained. People with disabilities want to have the same opportunities as everyone else, and they want to be recognized for what they can do, not what they cant do. We take individuals with disabilities who society has told are spectators and we help them transform themselves into performers and visual artists.
Dan Sullivan, a wood carver with a visual impairment, says it best, It continues to amaze me how much my artwork has taken off since associating with VSA Wisconsin. It is such a wonderful experience that as a result of being labeled an artist through your organization, I am now defined more than ever by ability rather than disability.
Source: http://host.madison.com/wsj/business/defining-individuals-by-ability-not-disability/article_5d6717d3-c068-5d9c-8a77-233b5a5eef5c.html
DISABILITY CONNECTION NEWSLETTER: 10 Things You Should Know about Emergency Preparedness
By SD Network, 2015-10-06
This is a great article in theDisability Connection Newsletterabout things that people with disabilities should know about emergency preparedness. Obviously, some of them don't pertain to people in Wisconsin, but there are a lot of great tips and resources in this.
10 Things You Should Know about Emergency Preparedness
- Americas PrepareAthon. More than 21 million people across the U.S. are participating in preparedness activities are you one of them? Its not too late to sign up forhttp://community.fema.gov/hazard/hurricane/be-smart" target="_blank" rel="noreferrer noopener">Americas PrepareAthon, which takes place on September 30th and marks the end ofhttp://www.ready.gov/september" target="_blank" rel="noreferrer noopener">National Preparedness Month. This nation-wide event includes activities in every state to make sure citizens know how to get ready for an emergency. Leading up to Americas PrepareAthon, learn about common hazards andhttp://community.fema.gov/take-action/hazards" target="_blank" rel="noreferrer noopener">download resourcesthat can help you prepare forhttp://community.fema.gov/hazard/earthquake/be-smart" target="_blank" rel="noreferrer noopener">earthquakes,http://community.fema.gov/hazard/flood/be-smart" target="_blank" rel="noreferrer noopener">floods,http://community.fema.gov/hazard/hurricane/be-smart" target="_blank" rel="noreferrer noopener">hurricanes,http://community.fema.gov/hazard/tornado/be-smart" target="_blank" rel="noreferrer noopener">tornadoes,http://community.fema.gov/hazard/wildfire/be-smart" target="_blank" rel="noreferrer noopener">wildfiresandhttp://community.fema.gov/hazard/winter-storm/be-smart" target="_blank" rel="noreferrer noopener">winter storms.http://community.fema.gov/stories" target="_blank" rel="noreferrer noopener">Read storiesabout individuals, organizations and communities participating in this important initiative. Findhttp://community.fema.gov/take-action/activities" target="_blank" rel="noreferrer noopener">PrepareAthon activitiesor add your own and helphttp://community.fema.gov/spread-the-word" target="_blank" rel="noreferrer noopener">spread the word.http://www.community.fema.gov/connect.ti/AmericasPrepareathon/register" target="_blank" rel="noreferrer noopener">Registeronline and be empowered to get prepared.
- Inclusion in Emergency Planning. Since one in five people in the U.S. has a disability, this population must be considered whenhttp://nod.org/disability_resources/emergency_preparedness_for_persons_with_disabilities/" target="_blank" rel="noreferrer noopener">planning for emergencies. Thehttp://www.acl.gov/NewsRoom/blog/2015/2015_09_04.aspx" target="_blank" rel="noreferrer noopener">Administration for Community Livingrecently called for the inclusion of people with disabilities in emergency preparedness planning. If you havent seen it already, watch the Federal Emergency Management Agencys (FEMA) http://www.fema.gov/media-library/assets/videos/107805" target="_blank" rel="noreferrer noopener">We Prepare Every Day public service announcement (PSA) and learn about emergency preparedness for people with disabilities. https://usodep.blogs.govdelivery.com/2015/09/18/the-importance-of-preparing-every-day-for-the-unexpected/" target="_blank" rel="noreferrer noopener">The Importance of Preparing Every Day for the Unexpected, a recent Disability.Blog post by guest blogger Marcie Roth, director of the Office of Disability Integration and Coordination at FEMA, further drives this point home. Thehttp://nod.org/" target="_blank" rel="noreferrer noopener">National Organization on Disabilityhas also developed ahttp://nod.org/assets/downloads/Guide-Emergency-Planners.pdf" target="_blank" rel="noreferrer noopener">guide for emergency managers, planners and respondersabout planning for people with disabilities in a disaster.http://www.ready.gov/individuals-access-functional-needs" target="_blank" rel="noreferrer noopener">Preparing in advance and creating a support networkallows people with disabilities to be included from the start in emergency planning. Disability.govshttps://www.disability.gov/resource/disability-govs-guide-emergency-preparedness-disaster-recovery/" target="_blank" rel="noreferrer noopener">Guide to Emergency Preparednessprovides additional resources.
- What to Have on Hand.Stocking up onhttp://www.fema.gov/media-library-data/1392389843033-75460345a2f4adcc5418a1da7cb25eef/2014_PrinterFriendly_DisabilitesSpecialNeeds.pdf" target="_blank" rel="noreferrer noopener">essential itemsthat may not be readily available during a disaster is a central part of emergency preparedness. Make sure to have at least a three-day supply ofhttp://www.ready.gov/food" target="_blank" rel="noreferrer noopener">food, water and medicine for each person in your household. Choose non-perishable items such as canned and dry goods and have a gallon of bottledhttp://www.ready.gov/water" target="_blank" rel="noreferrer noopener">waterper day available for each person in your household. Wheelchair users are advised to keep a manual wheelchair or cushion available. Store extrahttp://www.ready.gov/faq-details/Medications-in-an-emergency-kit-1370032125843" target="_blank" rel="noreferrer noopener">medication and medical suppliesin your emergency kit. Your medications may be affected by things that happen during an emergency, such as exposure to high heat or contaminated water, so always check tohttp://www.fda.gov/Drugs/EmergencyPreparedness/ucm085200.htm" target="_blank" rel="noreferrer noopener">make sure its safe to take the stored medications. Special precautions may be required forhttp://www.fda.gov/Drugs/EmergencyPreparedness/ucm085213.htm" target="_blank" rel="noreferrer noopener">insulin. If you have ahttps://www.medicare.gov/what-medicare-covers/prescriptions-in-disaster-or-emergency.html" target="_blank" rel="noreferrer noopener">Medicare Prescription Drug Plan (Part D)and you live in a place where a state of emergency has been declared, Medicare can help with getting the medications you need. To avoid any confusion, keep copies of your prescriptions in your emergency kit for reference.
- Planning for Your Service Animal.People with disabilities who rely onhttp://www.ada.gov/service_animals_2010.htm" target="_blank" rel="noreferrer noopener">service animalsmust also consider the animals needs whenhttp://nod.org/assets/downloads/Readiness-Tips-Owners-Pets.pdf" target="_blank" rel="noreferrer noopener">planning for an emergency. Youll want to includehttp://www.fema.gov/media-library-data/1392389819026-75460345a2f4adcc5418a1da7cb25eef/2014_PrinterFriendly_PetOwners.pdf" target="_blank" rel="noreferrer noopener">emergency supplies, such as food and water, a first aid kit, medications and important documents, among other items. If you must evacuate to an emergency shelter,http://www.iaadp.org/disaster.html" target="_blank" rel="noreferrer noopener">know your rightsas a person with a service animal service animals must be allowed in shelters, but you are responsible for its behavior. Under the Americans with Disabilities Act (ADA), emergency shelter workers can only ask if the service animal is required because of a disability and what tasks it has been trained to perform. They cant ask for documentation or certification for the service animal. Although geared towards pet owners, tips from thehttp://www.humanesociety.org/issues/animal_rescue/tips/pets-disaster.html" target="_blank" rel="noreferrer noopener">Humane Societyand thehttps://www.aspca.org/pet-care/disaster-preparedness" target="_blank" rel="noreferrer noopener">ASPCAcan also benefit people who use a service animal. For information about service animals and accommodating the needs of people with disabilities read http://www.ada.gov/emergencyprepguide.htm" target="_blank" rel="noreferrer noopener">Making Community Emergency Preparedness and Response Programs Accessible to People with Disabilities.
- Workplace Preparedness.Having anhttp://www.ready.gov/workplace-plans" target="_blank" rel="noreferrer noopener">emergency preparedness plan at your place of workis just as important as having one at home. Under the ADA, an emergency plan at work may be considered ahttps://askjan.org/media/emergency.html" target="_blank" rel="noreferrer noopener">reasonable accommodation. Together with your employer, you can create a plan that accommodates your specific disability. The U.S. Equal Employment Opportunity Commission hashttp://www.eeoc.gov/facts/evacuation.html" target="_blank" rel="noreferrer noopener">guidelines for employersabout how to talk with their employees in a non-discriminatory way about accommodations that may be needed in an emergency. Once an emergency plan is in place, employers and employees should holdhttp://www.dol.gov/odep/pubs/fact/effective.htm" target="_blank" rel="noreferrer noopener">emergency drillsas practice to determine if any changes should be made to the plan in order to ensure safety.
- Shelters and Accommodations.When an emergency strikes, your local emergency shelter may be the best option to stay safe.http://www.ada.gov/pcatoolkit/chap7shelterprog.htm" target="_blank" rel="noreferrer noopener">The ADA generally requires sheltersto provide equal access to the many benefits that shelters provide: safety, food, services, information and a place to sleep. All parts of a shelter, from its parking and entrances to restrooms, sleeping and dining areas, medical units and beyond, must be accessible to people with disabilities. Shelters should use thishttp://www.ada.gov/pcatoolkit/chap7shelterchk.htm" target="_blank" rel="noreferrer noopener">checklist of ADArequirements in order to understand how to best serve people with disabilities. When preparing to go to a shelter, complete thishttp://www.disabilityrightsohio.org/sites/default/files/ux/green-form-fill.pdf" target="_blank" rel="noreferrer noopener">shelter checklist, which will help you communicate about your accommodations and medical or other needs you may have once you arrive. You can find open shelters through thehttp://www.redcross.org/find-help/shelter" target="_blank" rel="noreferrer noopener">American Red Cross.
- Communicating during an Emergency.Emergency situations require quick, clear andhttps://www.fcc.gov/guides/emergency-communications" target="_blank" rel="noreferrer noopener">accessible communications. One critical part of our emergency communications system is the 911 network. You can call 911 from a home or mobile phone; if you have a hearing impairment, you may use the TTY service. Inhttps://transition.fcc.gov/pshs/911/Text911PSAP/Text_911_Master_PSAP_Registry.xlsx" target="_blank" rel="noreferrer noopener">some areas, you can also send a text message to 911. The Federal Communications Commission (FCC) has developed ahttps://transition.fcc.gov/cgb/consumerfacts/text-to-911-consumer-guide.pdf" target="_blank" rel="noreferrer noopener">guide about text-to-911 communicationsfrom landlines using TTY, as well as mobile phones, and how you can expect that to work. Another form of disaster communications, thehttps://www.fcc.gov/encyclopedia/emergency-alert-system-eas" target="_blank" rel="noreferrer noopener">Emergency Alert System (EAS), gives national, state and local governments the ability to share emergency information with the public via broadcast, cable and wireless cable systems. All EAS broadcasts and emergency information from broadcast television and radio are required to be accessible by audio and visual means. Thehttps://www.fcc.gov/guides/emergency-video-programming-accessibility-persons-hearing-and-visual-disabilities" target="_blank" rel="noreferrer noopener">FCC has specific requirementsfor the accessibility of disaster information and what must be provided to be people with disabilities.
- First Responders.Emergency responders and law enforcement officers must understand the needs of people with disabilities when responding to a disaster. When communicating with someone who is deaf or hard of hearing, when an interpreter is not available, there are other ways tohttp://www.ada.gov/lawenfcomm.htm" target="_blank" rel="noreferrer noopener">communicate effectively. The Autism Society offershttp://www.autism-society.org/living-with-autism/how-the-autism-society-can-help/safe-and-sound/tips-for-first-responders/" target="_blank" rel="noreferrer noopener">tips for communicating with children and adults with Autismor other sensory disabilities. You may also want to check out thesehttp://cdd.unm.edu/dhpd/pdfs/FifthEditionTipsSheet.pdf" target="_blank" rel="noreferrer noopener">tips for first respondersthat focus on many other types of disabilities.http://www.fr-dat.com/assets/ListPage/Promising-Practices-final-1-21-2011.pdf" target="_blank" rel="noreferrer noopener">This guidefrom thehttp://www.inclusionresearch.org/" target="_blank" rel="noreferrer noopener">Inclusion Research Institutedetails ways that emergency personnel can best serve people with disabilities during a disaster. Watch a clip from a video called http://videos.disabled-world.com/video/460/disability-awareness-training-law-enforcement" target="_blank" rel="noreferrer noopener">Disability Awareness Training for Law Enforcement that can help you communicate with and support people with a range of disabilities. The Substance Abuse and Mental Health Services Administrations (SAMHSA)http://store.samhsa.gov/apps/disaster/?WT.mc_id=EB_20140311_DISASTERAPP" target="_blank" rel="noreferrer noopener">Behavioral Health Disaster Response Mobile Apphelps behavioral health responders organize and share disaster preparation, response and recovery resources. It includes a directory of behavioral health service providers in affected areas.
- Current Events. You should have anhttp://www.ready.gov/build-a-kit" target="_blank" rel="noreferrer noopener">emergency preparedness kitandhttp://www.ready.gov/sites/default/files/documents/files/Family_Emegency_Plan.pdf" target="_blank" rel="noreferrer noopener">emergency planready for a wide variety of hazards and emergency situations. Learn about emergency situations affecting the U.S. right now and how you canhttp://www.ready.gov/sites/default/files/documents/files/FEMA-ReadySpNeeds_web.pdf" target="_blank" rel="noreferrer noopener">prepare forand handle them.http://community.fema.gov/hazard/hurricane/be-smart" target="_blank" rel="noreferrer noopener">Hurricane seasonin the Atlantic lasts through November; in the Pacific, it lasts until December. Keep track of approaching hurricanes with the American Red Crosshttp://www.redcross.org/mobile-apps/hurricane-app" target="_blank" rel="noreferrer noopener">Hurricane app. In addition to your emergency kit,http://www.fema.gov/media-library-data/1409003345844-0e142725ea3984938c8c6748dd1598cb/How_To_Prepare_Guide_Hurricane.pdf" target="_blank" rel="noreferrer noopener">prepare yourself and your home: clean up your yard, store outdoor items that could be blown away by high winds and board your windows. Always evacuate your home if instructed to do so. California in particular has experienced manyhttp://community.fema.gov/hazard/wildfire/be-smart" target="_blank" rel="noreferrer noopener">wildfiresthis year. Although the area is known for these occurrences, wildfires can happen anywhere at any time andhttp://www.redcross.org/prepare/disaster/drought" target="_blank" rel="noreferrer noopener">dry conditionsincrease their likeliness. As with all emergencies, its important tohttp://www.fema.gov/media-library-data/1409003859391-0e8ad1ed42c129f11fbc23d008d1ee85/how_to_prepare_wildfire_033014_508.pdf" target="_blank" rel="noreferrer noopener">be prepared. If you live where wildfires occur, you must behttp://www.redcross.org/prepare/disaster/wildfire" target="_blank" rel="noreferrer noopener">ready to leaveat a moments notice. Make sure youhttp://www.redcross.org/prepare/disaster/wildfire" target="_blank" rel="noreferrer noopener">respond appropriately have two ways out, a place to stay once you leave and take needed supplies with you.http://www.redcross.org/prepare/disaster/power-outage" target="_blank" rel="noreferrer noopener">Power outagescan happen at any time, too. Turn off or unplug lights that arent being used anymore. Limit how many times you open your refrigerator so food stays cool longer. When its time to cook, use perishable foods from the fridge and foods from the freezer first then use your non-perishables. If you want to use a generator, never use it in an enclosed space, like a garage, and follow thesehttp://www.redcross.org/prepare/disaster/power-outage/safe-generator-use" target="_blank" rel="noreferrer noopener">safety tips. Learn about what to do duringhttps://beta.ready.gov/power-outage" target="_blank" rel="noreferrer noopener">power outragesif you usehttp://www.fda.gov/downloads/MedicalDevices/ProductsandMedicalProcedures/HomeHealthandConsumer/UCM252812.pdf" target="_blank" rel="noreferrer noopener">medical devices that require electricity.
- Recovering from a Disaster.Disasters can take a toll on yourhttp://emergency.cdc.gov/mentalhealth/" target="_blank" rel="noreferrer noopener">mental and emotional wellbeing; your personal recovery is an important part of the process of overcoming a disaster.http://www.redcross.org/find-help/disaster-recovery/recovering-emotionally" target="_blank" rel="noreferrer noopener">Emotional and mental health recoverytakes time. A key resource for support is SAMHSAshttp://www.samhsa.gov/find-help/disaster-distress-helpline" target="_blank" rel="noreferrer noopener">Disaster Distress Helpline. Call1-800-985-5990(TTY:1-800-846-8517) or text TalkWithUs to 66746 to speak with a trained crisis counselor. Remember, everyonehttp://www.apa.org/helpcenter/recovering-disasters.aspx" target="_blank" rel="noreferrer noopener">responds to a disasterdifferently, so it is important to understandhttp://media.samhsa.gov/MentalHealth/TraumaticEvent.aspx?from=carousel&position=1&date=3112011" target="_blank" rel="noreferrer noopener">how to copeandhttp://emergency.cdc.gov/preparedness/mind/" target="_blank" rel="noreferrer noopener">help others copeduring difficult times. Parents can read http://www.fema.gov/pdf/library/children.pdf" target="_blank" rel="noreferrer noopener">Helping Children Cope with Disaster for information about how to help young children who are experiencing emotional issues related to a disaster. Situations such ashttps://www.usa.gov/after-disaster#item-37172" target="_blank" rel="noreferrer noopener">missing family members,http://www.ready.gov/returning-home" target="_blank" rel="noreferrer noopener">returning homeorhttps://www.usa.gov/after-disaster#item-35967" target="_blank" rel="noreferrer noopener">finding a place to staymay also contribute to post-disaster stresses. Financial assistance is also available. Visithttp://www.disasterassistance.gov/" target="_blank" rel="noreferrer noopener">DisasterAssistance.govor use FEMAshttp://asd.fema.gov/inter/locator/home.htm" target="_blank" rel="noreferrer noopener">Disaster Recovery Center Locatorto find help. You can alsohttp://www.fema.gov/do-i-qualify-assistance" target="_blank" rel="noreferrer noopener">apply for FEMA disaster assistanceonline or by calling1-800-621-3362. The Small Business Administrationshttps://www.sba.gov/content/home-and-personal-property-loans" target="_blank" rel="noreferrer noopener">Home and Property Loansare low-interest loans that help homeowners and renters inhttps://www.sba.gov/content/current-disaster-declarations" target="_blank" rel="noreferrer noopener">declared disaster areaswhose home or personal property has been damaged by a disaster. Even ifyoure not asmall business owner, you can apply for up to $200,000 to replace or repairyour primary residence. And remember,http://www.fema.gov/emergency-management-agencies" target="_blank" rel="noreferrer noopener">your states emergency management agencycan help you prepare for, and recover from, an emergency or disaster.
SEEKING NOMINATIONS: Wisconsin Long Term Care Workforce Alliance Caregiver Awards
By SD Network, 2015-10-05
Hereis the nomination form and sponsorship form for this year's WLTCWA Caregiver Awards. This year awards will be presented to four caregivers, a team of caregivers, andnew this year: a family caregiver or caregiver of a friend. We hope you will nominate someone you know for one of these awards and/or forward this on to any other organizations or listserves you may be affiliated with. These awards dont just recognize the winnersthey recognize all long-term care workers who work hard every day to serve the older adults and individuals with disabilities in this state.
As an alliance we thought it was very important to highlight and help sustain the important work of families and friends who are caring for a loved one in their own home with chronic, disabling health conditions (both paid and unpaid). We want to honor and recognize the strength and perseverance of these family caregivers who dedicate their lives to care for their loved ones.
The due date for nominations isFriday, October 16, 2015.Forms and essays can be either faxed to866-813-0974,emailed, or sent to the following address:
2015 Caregiver Awards
c/o GWAAR
1414 MacArthur Road, Suite A
Madison, WI 53714
A copy of the brochure is also available on theWI Long-Term Care Workforce Alliance Website. Thanks in advance for all your help to promote this event!
The committee would like to thank our sponsors:
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This is a great blog on disability.gov written by guest blogger Neal Seigrfried about the power of networking for people with disabilities. He explains that there are many different types of networking. He also points out that networking can be used for many different things-- not just employment. Networking can be beneficial in so many ways!
The Power of Networking
By Neil Seigrfried
For those of us with any kind of disability, we live our life in a normal world. We have to face the fact that only 20 percent of the U.S. population is disabled and many disabilities are not visually detected. For those of us who use a mobility aide or prosthesis, we have to get used to the stares and questions that are inevitable. Its always nice to learn how others in the same boat deal with this. This can be done best through networking.
Networking comes in different forms. A neighborhood, school or business function can be networking. In todays online world, social media is a huge form of networking. Simply put, networking is interacting with other people to exchange information and develop contacts.
Networking allows people to market themselves as in a possible career move. One can network to make social connections. We can also use networking to build on knowledge. We learn to live with what we are dealt. Unfortunately, some of us only learn enough to get by in our day-to-day routine. Networking allows people to expand their world by sharing ways of doing tasks. You might find that one way is easier and more efficient than the way you were first shown.
It becomes empowering to attend any event or function designed for people with disabilities. It is especially cool to attend a function designed specifically for your disability. I have been an amputee since 2004. In May 2004, after losing my leg in April, I read about a conference for amputees that was to be held that summer in Nashville. I felt the need to attend. Walking into the conference hotel was like, Gee, Ive arrived where I belong. Everywhere you looked were scooters, wheelchairs, walkers, crutches and lots and lots of prosthetic legs and arms.
I connected with as many people as I could to try to learn as much as I could about my new life. Everywhere I turned was a new learning experience. There were sessions available for just about everything you might encounter in life, even one on how to be intimate. I even took an acting class that was taught by an amputee actor. Such a great experience!!
That first conference for me was an epiphany. I learned more about being an amputee and dealing with amputee issues. I walked very well, but I learned how to carry myself better and with more ease. I learned easier ways to lead my daily life. It wasnt all business, though. There was pool time, where you could learn even more. Getting in and out of a pool isnt always easy when you only have one leg. And I was amazed that I did not swim in circles as I was told I would. Meal time and bar time usually gives you a chance to add some colorful touches to your disability. You loosen up a bit and become less rigid. This is the time to make connections with people by comparing and cajoling.
Ive attended every conference since 2004. Ive made friends from around the world. These are true friends, not acquaintances people who I long to spend more time with. I try to welcome and guide new attendees when going to conferences today. It can boggle the mind when youre trying to absorb so much in so little time.
I recently took a cruise through an accessible travel company where amputees were mixed with people with spina bifida. It was interesting to network with these guys. I got to understand more of their abilities as compared with those of an amputee.
Support groups are a great source of networking. These meetings allow people to come together, usually in smaller numbers, to share their experiences. Group meetings can also provide introductions to various aspects of your life you might think youve lost, such as sports, recreation and fitness. I get as much out of our support group meeting by helping someone else as I do from the program itself.
Social media has entered many of our lives. There are online pages for virtually anything and everything out there. Social media provides a real benefit for people with disabilities. It allows people in even the most remote areas to network with others.
The Amputee Coalitionmaintains aFacebook pagefor this purpose. It has exceeded 70,000 likes within its three-year lifespan. It isnt unusual to get 20-25 posts per day with up to 100 responses each. Weve even helped prevent four suicides. Amputees from all walks of life have found us. We help new amputees, their caregivers or family members and amputees who are suddenly experiencing problems after years of normal wear. We even get some who are contemplating amputation. They come to us comparing their present life with a useless limb to that of an amputee. Our primary concern is helping others overcome a problem, but we also become a cheering section for those whove accomplished a particularly difficult task. We share pictures, prayers, love and hope.
Networking can be a meeting of two to an infinite amount of people coming together to share. Share what you want, but have some fun doing it. Be sure to give back as you never know when your way might be the best way. If youre having a problem, dont be afraid to reach out. The next time you see a notice of a chance for networking, try your best to attend. It just might change your life.
Source:https://usodep.blogs.govdelivery.com/2015/09/24/the-power-of-networking/
WISCONSIN STATE JOURNAL: Disabled, elderly concerned about state changes to Family Care, IRIS
By SD Network, 2015-10-01
This is a great article in theWisconsin State Journalwritten by David Wahlberg about people with disabilities continue to voice concerns over changes in long-term care. He explains what some of the changes would mean for people. There are many valid quotes in this piece..
Disabled, elderly concerned about state changes to Family Care, IRIS
By David Wahlberg
Through Wisconsins Medicaid program, Nick Zouski, a disabled man from Madison, hires a caregiver to come to his home at 5:30 a.m. weekdays to help him get ready for work.
Under changes in the state budget passed in July, insurance companies will administer such long-term care, along with medical care, for some 55,000 disabled and elderly residents.
Zouski, 37, a quadriplegic from a diving accident who works at Access to Independence in Madison, is worried about the impact on his life.
I would challenge anyone to find a large insurance company that would send someone consistently to my house at 5:30 in the morning, he said. Its not going to happen.
Zouski was among more than 30 patients, advocates and others who testified Wednesday at a public hearing in Madison on the changes, set to begin in 2017.
The Department of Health Services is expected to release details early next year.
Currently, eight regional managed-care organizations oversee home care and other supportive services for about 43,000 disabled and elderly people through the states Family Care program, part of Medicaid.
Some 12,000 more rely on an alternative program called IRIS Include, Respect, I Self-Direct which lets them hire caregivers.
Both programs are designed to keep people out of nursing homes.
Under the changes, which the health department calls Family Care/IRIS 2.0, a smaller number of insurance companies known as integrated health agencies, or IHAs, will replace the managed-care organizations and offer an IRIS-like option.
Additionally, the companies would provide participants with medical care, something they now receive through other Medicaid coverage.
As part of the change, Dane County and seven other counties in Wisconsin that havent adopted Family Care will have to implement it.
Dane County has contributed extra money, which brings in federal matching money, to provide supportive services that county officials say are richer than those in Family Care. There is a waiting list, however, which is supposed to go away under Family Care.
The scope and complexity of the statewide changes has left patients and advocates concerned, many of them told health department officials at the hearing at Goodman Community Center on Madisons East Side.
Susan Oshman, of Madison, said her daughter, Meadow Cynkar, 40, has cerebral palsy, seizures and developmental disabilities. Oshman said Cynkar has been able to work three part-time jobs, pay taxes and live with others in a Madison apartment because of consistent care under the current system.
Changing providers to the new IHA could have devastating effects, Oshman said.
Tom Frazier, co-chairman of the Wisconsin Long-term Care Coalition, said Aging and Disability Resource Centers, established around the state as part of Family Care, should be maintained and not replaced by other entities, as has been discussed. The centers help people find services.
With the changes, were going to need all the help we can get, Frazier said. There will be a lot of confusion and destruction of peoples previous lives.
Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities, said state officials should make the IHAs accountable for the lifestyle quality of clients, not only medical factors such as hospitalizations.
Questions like: How much are they being employed in the community? Swedeen said. Are their choices being honored? Do they feel safe?
Fran Gentry, adult services manager for Dane County, urged state officials to make sure the IHAs dont jeopardize supportive services by focusing more on medical care. Also, the insurance companies shouldnt be allowed to have unlimited profits, Gentry said.
If profits are not capped, profits will increase with every service denial, and that would be bad, he said.
Karen Musser, president and CEO of Madison-based Care Wisconsin, one of the managed-care organizations that operate Family Care today, said the agency hopes to participate as an IHA in the new program.
But Musser asked state officials to lower financial reserve requirements. Critics have said most of the managed-care organizations dont have enough money to qualify.
Margaret Kristan, of the health departments long-term care division, told the audience that Wisconsin is a national leader in managed and self-directed long-term care. We want that tradition to continue, she said.
The hearing was the fourth held around the state this month. Three more hearings for the general public are scheduled, including another one at Goodman Community Center at 5:30 p.m. Oct. 7.
