In addition to care at home, the (DSS) (PCA) Waiver Program needs to fund personal care assistants to transport individuals with disabilities who cannot drive, and assist those who are on the job too.
This petition made change with 292 supporters!
Please Help Leonore and other people with disabilities get the care they need. Tell the Centers for Medicaid and Medicare Services to help people with disabilities. Tell them that in addition to funding for personal care assistants for people with disabilities in their homes, the Department of Social Services (DSS) Personal Care Assistant (PCA) Waiver Program needs to fund personal care assistants to transport individuals with disabilities who cannot drive, and assist those who are on the job, too.
“If you need personal care help at home, you'll need it at work, too." –anonymous CT DSS worker
Leonore, who is a Sterling CT resident with a severe physical disability that forces her to rely on others and a power chair, faces a world of challenges everyday most people take for granted. Yet she does most with a smile, and she is carefully sensitive to the feelings of all the living things big and small around her. Along with being a quadriplegic, Leonore is also a very capable and productive member of our society. She can type with her mouth faster than I think most can with their hands. She also writes with a pen in her mouth, and her mouth writing is the most beautiful I have seen. Yet even more than that Leonore is a counselor for the Southeastern Council on Alcoholism and Drug Dependence, (SCADD). While she faces many challenges, she adapts in what ever way she is able too. Yet she still needs the help of personal care assistants to live and go to work.
In my short experience intertwining within the lives of people with disabilities, I have come to understand that many non-disabled people’s ideas of people with disabilities is skewed, biased, and wrong. I once went into a store that sells handicap equipment and I became painfully aware that even the person who worked there felt like it is acceptable and normal for people with disabilities to be confined to their homes. Apparently, it is still difficult for some to imagine the kind of life a person with disabilities can have in the community. Well, I am here to say that Leonore and others like her, with some help, can have a good life and give back too, despite their many challenges.
For the past nine years Leonore has been getting funding from some CT DSS run programs. These programs allow her to hire her own PCA’s that the programs fund. Currently the PCA’s that help her assist her with all of her personal care and household needs, including getting her up in the morning, bathing, using the rest room, getting dressed, doing her hair, cooking, cleaning, shopping, driving her in her own modified vehicle, and assisting her with her personal care on the job. Without the assistants and the funding through the waiver, Leonore would be unable to complete the simple daily tasks that are necessary, and would not be able to maintain employment. The programs have helped her in her life yet, there are some problems and changes with the programs, and others like it, that impacts Leonore and others like her, greatly.
The PCA Waiver no longer allows funding for transportation in situations other than for medical appointments, nor does it fund PCA’s while the individual being assisted is working.
This basically says to people with disabilities: “We will provide funding for you to have assistants within your home, but not out in your community. This should suit you. You were not going to try to try to get a job or be an active member of our society anyway. And why would you possibly need transportation for anything other than medical reasons? Aren’t you always sick?” Yet Leonore and others like her with physical challenges want to live, contribute, and get fulfillment like those of us who are granted these luxuries without these physical hardships.
To the Centers of Medicaid and Medicare Services, please consider that when you decide to allow the funding to cover PCA hours while an individual is at their place of employment, and allow for funding for hours for non-medical travel, you are:
- Allowing more residents a job
- Allowing more residents to pay taxes
- Not requiring more money for the budget, as some of these PCA hours that are easily given for support at home would be utilized outside the home instead
- Allowing the person with disabilities to pay back the system, and in some cases get off of social security like Leonore has, (which is the ultimate goal of social security)
- Allowing the person with disabilities to give to others and the community, thereby knocking down barriers, (physical and societal), which is a win for both parties
- Assisting a person with disabilities to gain true independence, and quality of life, not just the quality of life that others who do not understand see for them
- Fighting the stereotypes against people with disabilities
- DSS has an agency specifically designed to help people with disabilities to gain employment, the Bureau of Rehabilitation Services (BRS), but they don’t help you at work with PCA’s. Why?
- If you currently have a job, and suddenly you could no longer get up out of your chair, and lost all of your motor skills necessary to get files out of your drawer, or pick up your telephone to your ear, or make copies, or get to the bathroom on your own, or get the fork to your mouth to each lunch, or get your coat on and off, would you be happy with having to quit that job even though you were still cognitively able to do your job and still do a great job? Would you feel satisfied to have these services at home only?
- If you don’t work and you are a person with a disability, do you think you could gain self fulfillment and help contribute to others and society if only you had someone to drive you to your job?
- Would you be happy to be stuck at home and only be able to leave for medical appointments?
In Leonore’s case she is awesome at the job she does at SCADD. She faces difficulties getting there and everywhere. Yet she loves what she does. I believe she is truly helping the people she counsels because she cares, and most importantly, is as capable as her able-bodied co-workers, but just needs physical support on the job, as she does at home.
Leonore has many challenges daily and DOES contribute.
It is fulfilling to her life, as it is for the many around her that she knows and helps. When the assistants help her with her personal care while at work, Leonore is then able to help all these people around her that need her special help and care. Her help and that of others who would love to work should not be taken for granted. These people could be your friends and family.
Taking her work PCA hours will be making her already difficult life even more so.
The “No PCA's at work" and “No transportation except for medical transports” policies are TERRIBLE. The PCA Waiver program's purpose is to bring independence to those with disabilities. Independence should include in-home AND out of home activities.
If people with cognitive disabilities are allowed funds for on-the-job supports, then so should people with other disabilities. This is an issue where policies have to change.
Leonore’s hours were approved for her on-the-job initially so the funds are available. And BRS has helped her with her education, so how can she not get help with work? What is the point of the state helping her get her education if she cannot be employed after, because she needs PCA's at work, just as she does at home, and to drive her?
With out these hours Leonore will have to quit the job she went to college for, and fought hard for years to get, along with wasting her time on the extra certification hours she has worked on. She has worked so hard. She deserves the right to work and help others. So do many other people in her position.
Leonore is scheduled to lose her PCA hours for work and transportation to work on January 1st 2014. There is time to change this, but only with your voice for change. Please sign the petition and tell the CMS that people with disabilities under the Medicaid PCA Waiver should get to use hours if needed to have personal assistance at work and to travel into the community. Why? Because this is a civil rights issue that affects everyone disabled or not, and it is the right thing to do. Thank you.
Please feel free to read a letter from Leonore in her own words regarding how these policies are affecting her:
Dear Sir or Madame:
My name is Leonore and I am a Connecticut resident with a Master’s degree in Rehabilitation Counseling, and an employed position as a detox counselor for the Southeastern Council on Alcoholism and Drug Dependence (SCADD) since January 16, 2013. I happen to have a severe physical disability that forces me to utilize the assistance of others through personal care assistants, or PCA’s, within my home as well as out in the community for all of my care and daily activity needs. I feel compelled to write this letter due to events that recently have directly and negatively impacted my life. Since October is “National Disability Employment Awareness” month, I would like to take this time to spread some awareness.
The Department of Social Services (DSS) website writes a very powerful mission statement on the website stating, “…The Connecticut Department of Social Services is people working together to support individuals and families to reach their full potential and live better lives. We do this with humanity and integrity.” I would like to challenge the veracity of this mission statement as an employed person with a disability who will be forced to quit employment soon. There is a civil rights issue regarding people with disabilities maintaining employment, and it has nothing to do with employers, but rather with our own nation’s Centers for Medicaid and Medicare Services policies. There are insidious, still-standing societal assumptions that people with disabilities cannot be productive members of society, and need to be assisted solely within the home. Unfortunately, the Connecticut Department of Social Services is cultivating these assumptions with its ill-thought out policies regarding funding for personal care assistants.
My PCA’s are paid through the Connecticut PCA Waiver through Medicaid, under DSS. Through the PCA Waiver when I got on the program about nine years ago I was able hire my own assistants and have them help me in my house as well as out within the community, and have them transport me. Once I started looking for employment much more recently following graduation of my Master’s program, I knew I would need an hour increase to accommodate me so I could have PCA's with me at my job as well because the effects of my disability are not dependent on my environment. I then met with my DSS worker who helps me manage my PCA hours to discuss my job-seeking and a PCA hour increase to support my personal care on the job. She stated that I could use my PCA's on the job and that they could drive me there. She then adjusted my future PCA hour plan to accommodate my new working schedule and a few days later I received notice that her supervisor approved my hour increase for my new work and home schedule.
On September 25, 2013, I received a very disheartening phone call from my DSS worker stating that the higher-up in DSS reviewed my plan and said that the waiver’s policies explain that PCA’s are no longer to be used as drivers, and not to be used within the workplace of the individual needing personal care assistance. As of January 1, 2014, those extra hours that had been previously awarded to me to accommodate my personal care at work will be taken away, which will have a direct impact not only on my current employment, but on my hope of any future employment.
This is not an issue of my worker’s lack of awareness of her program’s policies, and this is not even an issue of one Connecticut resident needing to unwillingly quit a job. This is an issue of civil rights, the right of people with disabilities to work in their communities within the positions they want, and with the transportation and personal care support that is essential for them to physically be at the job site. Activities such as driving, eating, utilizing the facilities, getting through doors, mobility, getting my coat on and off, fixing my hair, and a plethora of other things are all acts of normality that are often taken for granted by those who can do these acts effortlessly. For many others including myself, these acts only happen with the help of others, and are necessary within the home as well as out within the community at a job site. DSS has an agency specifically designed to help people with disabilities to gain employment, the Bureau of Rehabilitation Services (BRS). This agency has helped me and others tremendously to gain the training necessary to gain a career, which I took full advantage of.
But now what?
I will now have to sit on that degree at home. I will have all of my personal care supports at home but not in the workforce.
I wish I could say that I can just use my degree to find the job I want, become hired, and work. I and many others however, do not have that luxury. I wish I could say that I can just have my PCA drive me to work or to the store, or to a friend’s house, but that too is a luxury because according to the policies, individuals can only have their PCA’s paid if they are “assisting in a medical transport.” Therefore I am writing this letter to fight for these luxuries that many take for granted. I want CMS policy-makers to know that people with disabilities do not only go out within the community for medical appointments, and should not be forced to live that stereotype by not allowing PCA hours for other transportation requirements. I would like the CMS policy-makers to see that while utilizing PCA services at home has been great, there is a whole other world out there where doors are being shut to those who want to work and can work and be productive members of society with personal care support. These doors need to be opened.
This is the way DSS can help people reach their full potential and live better lives.
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