Letters to the Editor
These are just suggestions; they can and should be tailored to the individual submitting them. Please feel free to use any part of the letters, or the letters themselves in any advocacy effort, letter to the editor, online column, etc.
Thank you,
Summer Ludwig
Resource Center for Independent Living
785.267.1717
Do the Right Thing
While most of us get to choose where we live, what we eat for dinner, our recreational activities, and where we shop, many members of the disability community are not afforded these same freedoms. In fact, over 5.000 people are on the Physical and Developmental Disability waiting lists to receive home care services in their homes in Kansas alone. Their only option is to enter nursing facilities to receive needed care.
In the facilities, our friends, family, and neighbors are forced to live according to the rules of the nursing home. Many of the personal choices that we often take for granted are yanked away. There is something very wrong with a society that forces segregation and second class treatment onto one segment. Civil Rights are guaranteed to American citizens and yet we routinely violate the Civil Rights of people with disabilities by not funding services necessary to allow someone to remain in their own home, where they choose to be.
While I personally believe that individual choice should be provided to us regardless the financial cost; in this case, it makes much more fiscal sense to provide Home and Community Based Services over nursing home care. In fact, studies consistently show that they can be provided at ½-2/3 the cost of nursing home care.
Kansas is somewhat known for the neighborliness of its citizens, our innate friendliness. I am hopeful that those traits will translate into action for people with disabilities. Remember the plight of your family member, friend, or neighbor who is facing the horrible choice of losing everything and entering a nursing home or receiving no care. Contact your local legislators and urge them to do the right thing and support the civil rights of disabled Kansans.
Raising Revenue to Cover Necessities
We are continuously hearing the call for government; both State and Federal, to live within its means, like our personal families do. This argument is short sighted. When budgets are tight, families cut out luxuries, they cut out all of the extras; they do not cut out necessities. If a family can't afford necessities, food, housing, electricity, transportation, then they must find a way to raise their income.
Those legislators that support cutting essential services such as Medicaid, Medicare, and Social Security while stating that raising taxes on our nation’s top earners is not an option, are saying that taking care of our country’s poor, disabled, and disenfranchised is a "luxury". I refuse to believe that I live in a county or a state where that is true.
The programs being cut, the people losing or waiting for services, they ARE NOT "extras" they are people, citizens, voters, friends, family, and community members. They are NECESSARY!! It is time to raise revenue so that our Nation’s necessities are covered.
On SRS Budget Cuts
In the last legislative session the new Secretary of SRS, Robert Siedlecki, seemed to welcome budget cuts, at a time when over 5,000 Kansans with disabilities are on waiting lists for necessary services. He assured Legislators that whatever budget they gave him, he would make work.
We are now into FY 2012 and we still do not know exactly how he and the rest of the SRS administration plan to live within their budget. While Legislators were under the impression that services and programs would not be cut, that has not been the case.
For instance, starting November 1st a system will be put in place that will “save” the state over $2 million in State General Funds (SGF). These dollars are coming directly from providers of Home and Community Based Services. These are programs that we should be expanding as they not only affords independence and choice to people with disabilities, but are a significant savings over nursing facility care.
Several SRS offices are slated for closure across the state in an effort to save $1 million. Closing offices means that people with disabilities, families with children living in poverty, and the elderly will have less access to the services and programs that they need to survive.
The Kansas Legislature was concerned about the direction that our new SRS Secretary may go and had asked for monthly reports from his department, something that was vetoed by Governor Brownback. It is my belief that our government and its departments should be accountable and transparent to its citizens.
Please contact your local Legislators and ask them to pay attention to the changes being made within SRS and to support our most vulnerable citizens by holding the SRS administration accountable.
A Culture of Life
Repeatedly Kansans have been told that this administration wants to promote “a culture of life”. I am glad to hear it! To me a culture of life would be one that would value each of its’ citizens, promote the independence and civil rights of all, and provide necessary services and programs to protect the poor, disabled, and elderly.
That doesn’t seem to be the agenda of Governor Brownback, however. Funds have been siphoned from those who are truly needy to support the pet projects of this governor. For instance, the funds that provided a very small monthly cash payment to individuals who were disabled and waiting to begin to receive Social Security payments were taken.Now that money is being used to provide a program to strengthen the marriages of the employees of Wichita area corporations.
Over 5,000 Kansans with Physical and Developmental disabilities remain on waiting lists to receive services in their homes, services the state will pay twice as much for them to receive in nursing facilities. This does not indicate that the state values the lives of these people, their families, or their loved ones.
It is time that the disability community stands up to the state and demands that their lives are seen as equally valuable and worthy of protecting. People with disabilities are fathers, mothers, sisters, brothers, sons, daughters, friends, teachers, and important community members. The services and programs that make it possible for us to remain in our homes and be contributing members of society are absolutely a part of “a culture of life” and should be supported by this administration.
If you are a Kansan with a disability or have a family member, friend, or neighbor with a disability your voice is needed. Please contact your legislators, the governor, and the Kansas Department of SRS and let them know that these are important, necessary services that would seem to be right in line with their stated goals.
I am a Case Manager
I am a Case Manager, yet I do not manage cases, I work with people. My job is to visit people in their homes who have physical disabilities and complete an assessment to determine if they are eligible for a Medicaid program that provides long term care services to them in their own homes.
People used to be relieved when I would complete my assessment and tell them, “Yes, we can help you.” The Home and Community Based Services that they had qualified for would allow them to have assistance as they needed it allowing them to remain independent in their homes and communities and keep the dreaded nursing facility entrance at bay.
Things have certainly changed. Now when I complete an assessment I am forced to say, “Yes we can help you, but there’s a 2 and ½ year waiting list (at least). I look into the eyes of the loved one that is no longer able to stay with them and provide care and see the fear, frustration, and tiredness. I hear the cries of the woman who is terrified that without services she will be committed to an institution, when she is perfectly capable of staying in her own home with some supports.
There is no good explanation for this, Home and Community Based Services are much less expensive than Nursing Facility care, a fact that we as advocates have been stressing for years and years. This year, the savings is even greater, if Kansas were to opt in to the Community First Choice Option that comes into effect in October, we would receive greater Federal assistance to pay for the services as well as ensure that individuals would not have to wait.
The long term effect of providing Home and Community Based Services to all who qualify instead of institutional care is not only a greater integration of individuals with disabilities into their communities, but also a huge financial savings to the state.
Olmstead Decision
Twelve years ago, the United States Supreme Court rejected the state of Georgia’s appeal to enforce institutionalization of individuals with disabilities and affirmed the right of individuals with disabilities to live in their community in its 6-3 ruling against the state of Georgia in the case Olmstead v. L.C. and E.W.
The Olmstead Decision gave people with disabilities the tools necessary to demand what is rightfully theirs—the right to live independently in their community. The Supreme Court affirmed the ruling of the lower courts that Georgia had violated the integration mandate under Title II of the federal Americans with Disabilities Act (ADA), which states that states must develop comprehensive plans to end unnecessary institutionalization at a “reasonable place” with the goal of integrating individuals with disabilities into mainstream society to the fullest extent possible.
While it is frustratingly sad that this action took place only 12 years ago, what’s even worse is that our State continues in ongoing violations of the ADA and the Olmstead decision. Over 5,000 Kansans with disabilities are on years long waiting lists of in home services; however, the state will provide immediate institutional care, a clear civil rights violation.
In fact, Kansas has a program that will provide in home services to individuals but only AFTER a 90 day nursing home stay. We will allow someone to lose all of their possessions and frequently their home and become institutionalized for 90 days, and then assist them financially to transition to in home services, another clear civil rights violation.
While disability may not directly affect you, it almost certainly affects someone you care about. It is up to the disability community; those with disabilities and the loved ones and advocates of those with disabilities, to stand up for the civil rights of all Kansans. If you have been denied services that would allow you to remain in your home, please consider filing a Civil Rights Complaint with the Office of Civil Rights. Your local Center for Independent Living can help you find the information.
Save Our State, Save Our Services (SOS)
The disability community has been sending out an SOS this year to our Legislators and the Governor, Save Our State! Save Our Services! The climate has gotten particularly challenging the last several months and the upcoming Legislative session promises to be an uphill battle.
There are over 5,000 Kansans with physical and developmental disabilities on waiting lists for Home and Community Based Services, at least 131 people have died while waiting. These services are necessary for individuals to remain independent and contributing members of our communities.
For many people with disabilities, employment is only possible if HCBS are in place. Kansas boasts a higher employment rate of people with disabilities than the national average; this can only continue if people have access to necessary services. Studies show that people with disabilities who are employed reduce their health care costs by 2/3.
Lt. Governor Colyer is heading up a Medicaid Reform task force with the goal of saving $200-$400 million and provide a higher quality of health care at a lower cost. We believe that access to Home and Community Based Services to all who qualify is a very important component to any Medicaid Reform.
Not only do HCBS cost significantly less than nursing home care, the result is a more independent, empowered disability community that can and will contribute to our communities.
Centers for Independent Living
Centers for Independent Living (CILs) are agencies delivering services for Kansans with disabilities by Kansans with disabilities. They are tasked with providing 5 core services; Information and Referral, Peer Counseling, Independent Living Skills Training, Advocacy, and Deinstitutionalization.
Information and Referral is providing information needed and requested regarding disability, community resources and making appropriate referrals to other agencies as needed.
Peer Counseling is the opportunity for Kansans with disabilities to work with and learn from other Kansans with disabilities. For example, a peer may assist someone with learning the Public Transit system. In this way people with disabilities are assisting other people with disabilities and the Peer connection helps to ensure success.
Independent Living Skills Training encompasses a lot of different things! We work with individuals on things like budgeting, locating and using assistive devices, finding accessible housing, assistance with finding employment, navigating the health and insurance systems, and other topics as needed.
The two different types of Advocacy that CILs provide are Individual Advocacy and Systems Advocacy. Individual advocacy is training and support for individuals to be able to advocate for their own needs and desires. This can be across many areas including employment, health care, housing, or education. Systems Advocacy is focused on changing the laws and policies at community, state, and federal levels.
The final Core Service is Deinstitutionalization. This is simply assisting Kansans with disabilities to reintegrate back into their communities from hospitals, nursing facilities, or in-patient rehabilitation facilities. Consumers have a choice about where they live and receive services and CILs make sure that they are knowledgeable about their options and support them in transitioning.
Centers for Independent Living provide these services free of charge to anyone with any disability; they accomplish this on a very small budget, about $2.7M a year for the entire state. For over 30 years, CILs have helped thousands of Kansans with disabilities live on their own, find work, raise families, and become active autonomous members of their communities.
I’m Waiting
I was assessed for Home and Community Based Services because I am physically disabled and need some assistance with different areas of my daily life including bathing, cooking, and doing my laundry. The woman who came out and completed the assessment, 2 years ago in October, told me I was eligible for the services but that there was a waiting list. I never dreamed I would be on it for so long.
I asked for help only when I had no other options, my mother who had been providing my care had a stroke and was unable to care for herself afterword, let alone me. I don’t have any other family that can help and while I do have some friends close by, they all work during the day when I need the majority of assistance.
I have struggled to take care of things on my own, and although I’m told that I can get services if I just go into a nursing home for 90 days, I have rejected that. I do NOT need a nursing home; I do not WANT a nursing home. I need minimal supports, but the supports I need are necessary. I have tried to get some help from others, including my church, but have not been able to.
I have a very limited income and cannot afford to pay someone to come and help me. Because of my lack of supports, I have been hospitalized 3 times in the last couple of years, each time due to a fall. When I could no longer stand not having bathed, I tried to do it myself. A broken wrist, a displaced hip and numerous bruises have convinced me to not try that again.
I am a person, I am intelligent, caring, give back to my community but I am denied the most basic care because the state doesn’t want to expend the money for it. They will pay far more to lock me up and take away my freedom. How does that make any sense?