Being a caregiver is hard work. Everyday, there is a new obstacle to face and overcome. Here are five tips and considerations to be more effective to make your role a little easier. Knowledge is power. Realize there are many opportunities for mistakes along the way: by you, your doctor, the pharmacy, the hospital, or the lab. We are all human. Being aware that you may not understand as well as you think you do, or that doctors make mistakes, can help you be the best caregiver you can be. Remember that knowledge is power. Avoid the temptation to bury your head in the sand! Be involved. It is vital that you are fully engaged in the process. Don’t just sit back and assume someone else will manage things for you. You must be the captain of the ship. Effective communication between the patient, caregiver and physician leads to better outcomes. Be prepared and stay organized. Doctors are often rushed seeing numerous patients in time limited spots. Being organized is vital to an efficient visit. Have a folder to keep track of your questions, forms, medications, recommendations and test results. Always bring patient medical records with you, along with insurance or Medicare information. Pay close attention to all medications. Medication is often a critical component of a treatment plan, yet so many struggles to follow medication regiments. Not following instructions, not completing a medicine or taking wrong dosage, can lead to adverse health effects and often, new problems for the patient and the caregiver. Talk to the pharmacist if you have questions, use pill organizers to create a system, and always carry a full list of medications the patient is currently taking. Don’t be afraid to ask for help. Stay connected with family and friends, as you continue your role as a caregiver. Think about your needs and reach out to your community. Resist the urge to become isolated or think you can do this alone. CSCSO can help with any advice or needs that you may have. We provide disability support and provide a community for which people can thrive.
Is the problem money or lack of caretakers? Eriech Tapia wrote a story for News OK explaining that although Developmental Disability services might be cut, the real problem is that there are not enough people wanting to become caretakers. The following story explains more. People who work in the Department of Human Services' Developmental Disability Services department take care of more than 5,500 disabled in the state, while managing a waiting list for services that continues to grow and a labor shortage among providers due to low pay. Possible cuts could also jeopardize the 7,548 people who are on a more than 10-year waiting list to receive benefits through a program administered through DHS called the Medicaid Home and Community Services Waiver. It's a federally funded program that requires the state to pay between 20 and 40 percent of its total budget. Cuts also could hurt the 1,200 people who receive state-funded benefits through the Department of Human Services' Developmental Disabilities Services department. The program is funded by about 60 percent from Medicaid and 40 percent from the state. "It is a major concern for us," said Marie Moore, interim director of the Developmental Disabilities Services at DHS. The DDS department is facing budget cuts that could range from $3.9 million to reduce services to $11.8 million to eliminate services, creating a ripple effect among partner nonprofits that contract with DHS who could lose some or all of their employees. "We are having difficulties, as it is, finding employees to work at the wages we pay due to the insufficient reimbursement rates," said Lara Morrison, executive director of the Central State Community Services Oklahoma Overseeing a home with three people who are immobile, Shantene Gordon has worked with the nonprofit for more than 14 years and is paid $10.50 per hour as a home supervisor, working upward of 48 hours a week. A regular caretaker in a home is paid a maximum of $8.50 per hour, which could mean living in poverty for a parent supporting two children, she said. "If you get somebody that sticks around for years in this job, you are doing lucky because a lot of the time people just come in, get trained and they are gone," Gordon said. Gordon blames the state and federal governments for neglecting to adequately fund Developmental Disability Services at DHS. Reimbursement from DHS pays for staff, transportation and therapy. The cost of room and board is paid by a resident's Social Security income.Inc. "We are a bare-bones employer," Morrison said. Less than 1 percent of her staff are administrators. Further cuts could force Morrison to scale back on services to individuals in homes across the state, but she said that forcing people over to private-pay options would not work. "There are so few people out there who can afford private-pay," said Morrison. Those costs for various types of service average around $15 an hour, she said. "If the funding stops, we stop." The share that the state must pay [...]
CSCSO is proud to advocate for people with intellectual/developmental disabilities! Check out this article from Mike Mort commenting on disabled activism. DISABLED FOLKS (WE GET THE JOB DONE) All across the United States something powerful is happening, have you noticed? People are speaking up, speaking out and sitting in. Wheels are turning, tides are shifting and voices are demanding to be heard. In a country forged by resistance, protest and pure force of will, people are fighting for their very lives once again. Lives that our culture still finds inherently other, at times even lesser. A diverse group, organized under a common, sometimes conflicted banner known as disability. We’re strong, we adapt and we sure as hell get things done! Disabled Protest Right now, disabled activists are fighting arguably one of the most important battles since the passage of the Americans with Disabilities Act (ADA). Paralleling the movement for disabled civil rights in the 80’s and 90’s, organizations such as ADAPT are leading the charge. Things like equal transportation were not just gratuitously given by the government, they were demanded using direct-action protest methods. Activists today continue to make the “dis” in civil disobedience stand for “disabled”. From Washington D.C. to Chicago, from Ohio to Colorado, there are disabled people holding their elected officials accountable. Currently, the Republican controlled White House, Congress and Senate are seeking to alienate self-evident truths. The health plan nicknamed “Trumpcare” would cost many disabled Americans their life, their liberty and certainly the pursuit of happiness. This bill would strip roughly 22 million people of health insurance and cut Medicaid by around $800 billion over the next few years. Since disabled people would be some of the most deeply impacted by the cuts, we’re bringing the thunder. Disabled Protest 2 Activists like Anita Cameron, Stephanie Woodward and Gregg Beratan filled the hall Mitch McConnell’s office, willing to be arrested for the cause. In Denver, protesters took part in a sit-in that lasted nearly 59 hours. Among was disabled lawyer Carrie Ann Lucas who defiantly said, “We are not going down without a fight… I’d rather go to jail than die without Medicaid!” Disabled activists are also extremely connected; for every one protesters on the street there’s a dozen more online. People like Dominick Evans, Alice Wong and myself use the internet as our platform for change. In the battle to preserve healthcare, many lives hang in the balance and it’s up to all of us to fight. When politicians opinions can so deeply affect the life of someone with a disability, that life is inherently political. Democracy does not end at the ballot, it carries forward with every heartbeat and keystroke of protest. These are very uncertain times, however, there is still hope in resistance. As Martin Luther King, Jr. once said, “Our lives begin to end the day we become silent about things that matter.”