By Lori Fitzell
For those of you who haven’t heard, there have been recent changes to the Medicaid Waiver programs in Maryland. Beginning in January of this year, the Living at Home waiver and the Older Adults waivers merged to become the Community Options Waiver. This is a great thing because now, the
Services provided in each program are available to anyone who applies. Besides this, there have been some new services added as well. So now a person who lives in a nursing facility and applies for and gets a waiver can have community services like attendant care, case management/supports planning, a personal emergency response system, transitioning funds, Meals on Wheels, assistive technology, environmental modifications, Medical Day Care services, Assisted Living, Senior Center Plus and more. Again, these are all options you can choose from with the new Community Options waiver program.
In addition to this waiver, another program also started that provides similar services for people who are already living in the community and need attendant care. The CFC or Community First Choice program can provide the same list of services as stated above but it does not cover any Medical Day Care, Assisted Living or Senior Center Plus services.
Lastly, people who were receiving up to 2 hours of help through the MAPC program (Medical Assistance Personal Care) can now receive more hours if they qualify. They are also eligible for Case Management and Nurse monitoring. In addition, the care staff now must be first aid and CPR certified. They will also be listed in a searchable provider registry online (sometime this year).
It’s easier than ever before to move successfully from a nursing facility to the community using a waiver. Once the services have been put into place, you’re in the driver’s seat (with support as needed from your Support Planner). This starts, in my experience, before you even leave the nursing facility. While you are waiting for the waiver processes to get completed, you should begin interviewing and hiring your personal care staff. Get help from your support planner if you want it; otherwise, gear your interview questions around the way you want your day structured and the expectations you have of your staff. Make sure to schedule them to come in at times that fit your lifestyle. Do you want them to do the food shopping for you or do you want them to accompany you to the store to assist you with the shopping? How much of the cooking, cleaning, bill paying, laundry and fun activities do you want them to be a part of?
There is usually a Discharge meeting held about a week before your move to the new place. This is the time to involve your family, friends, doctors and support planner. What services need to be put in place; will you need a hospital bed to be ordered by your doctor? Are you able to get a 30 day prescription of your medications before you go? Is your staff scheduled to begin working the day you arrive home? Can family be involved to help with the physical move? Can someone be in charge of getting toilet paper, paper towels, cleaning supplies and anything else you might need in the first few days?
As time goes by, you will find that family and friends will not be as available on a daily basis and it is time for you to guide how your life looks. You will need to be a good Employer and train your staff to do things the way you like to have them done. Develop a good relationship from the beginning, setting boundaries around good work ethics, responsibilities and other expectations. Set up a back-up plan for when people are sick or weather is really bad.
This is also the time when you will be establishing your routine and making decisions about what you want to do with your new freedom and the community you are now a part of. Are you interested in volunteer or gainful employment? Do you want to belong to a Friday night bowling league or attend church? Are you interested in looking for a long term relationship? This is the time to develop your interests, be a part of your community and enjoy life to the fullest!
So What Could Go Wrong?
Services for people with disabilities certainly have gotten better in the last 10 or 15 years but along with every great program(s) comes concessions and reality. In an effort to provide waiver-like services to people who live in the community already, the CFC program was started in January of this year. Very simply put, that means that waiver funding needed to be stretched even further to accommodate more people. In talking and working together with various service providers in Maryland, we are finding out that people who might have received up to 12 hours of attendant care daily on the Community Options waiver, are now receiving only about 5 or 6 hours per day. A new assessment tool called InterRai is being used together with a system of allotting money for the amount of care needed, called RUGS (Resource Utilization Group) This results in the disbursement of less time for attendant care than when previously using the AERS ( Adult Evaluation and Review Services) assessment tool in the past. Mike Bullis, Executive Director of the IMAGE Center is a strong advocate and is leading the crusade at the state level to help replace adequate attendant care hours to waiver participants whose hours have been cut. In the meantime, what you need to know is that 1) this is happening and could affect you if you are now or will be taking part in a waiver program, 2) that you should work with your Supports Planner to ask for an exception if you do not get a sufficient amount of hours, and 3) if the exception doesn’t yield better results that you then file an appeal. Again, your Supports Planner can and should assist you with all or any of this. Remember that you are the best advocate in your life and if you feel your health and safety is at risk for any reason, you need to speak out loud and firm for yourself.
If you wish to join Mike and the IMAGE Center in the fight for adequate attendant care hours, please call us for more information.
So glad you asked! Depending on how long you’ve had your disability and how much time you have spent in the nursing facility, you might not have a clear idea of how much you can and can’t do for yourself when you get back out on your own. Since you’re in a nursing facility, you are handed your meds, your meals are prepared for you, your laundry is done for you someone helps you shower…you get the picture. I suggest that while you are still a resident, that you talk with your social worker or the nurses’ station and ask them to help you do more on your own. I know…they may look at you like you have 2 heads, but ask them to just supervise you doing tasks independently for awhile until you find out how much you can actually do on your own. Then when you do reach your “Home Sweet Home “destination, you will have a better idea of how hourly attendant care staff can assist you and how much you can do by yourself. Also, don’t forget that you can get some assistive technology that could help you get dressed, cut your food, stay safe in the shower, etc. If you have any questions, please call us!
If you are already in the community and your family is handling all your business and “taking care” of you, ask them to give you some space and time to see how much you can do on your own as well. Whether you will be staying in your current home or moving to another apartment/place, you need to be aware of all that you can accomplish independently and how much you will be needing assistance.
All your life you’ve had a boss and now you need to be one? Now that you’re out on your own (with supports) you will need to train your staff (yep, your staff!) to complete the tasks you need assistance with, using the method you prefer. This is your life, your home and your stuff! Teach your staff how to do things the way you like.
Along the same lines, train your staff how to assist you with your physical needs. They should be coming in to start the day at a time that is congruent with your lifestyle and preferences. Let them know what you would like the day to look like; do you like to shower in the morning or evening hours? Should they do the shopping with or without you? Could they get you ready for the day and then leave for a few hours and come back in the evening hours? Should they cook for you, do you need help with cleaning? They should be helping you with the things you cannot do, the way you want them done.
Make sure they are coming in on time and respecting your wishes and your home. Let them know when they can take a break, talk on the phone, eat their lunch, etc. Let them know if they are breaking the rules (did you teach them what the rules are?) or if they are not doing something to your expectations. Do you have an agreement that they can bring their children with them on Tuesdays? Can they leave early on Fridays if they stay late on Wednesdays? In other words, decide when, what and how you want things done then make sure to train your staff well!
As I mentioned before, a back-up plan is a must! If your staff get sick or want to go on a vacation, you will need to have at least 1 other person who can fill in relatively quickly. When you hire someone is the time to set up some back-up people, not when the situation is already happening. See if your attendant knows of some other people or use family, neighbors, friends, anyone you feel comfortable with.
Part of being a boss is knowing when to let someone go. This is not an easy task for anyone but it is especially difficult when you have to rely on someone for your physical needs. Your Support Planner is someone you can rely on to assist you with interviewing a new person/people for the position. He or she can also assist in the firing and transition process if you want. Keep in mind that if a staff person is abusive or neglecting you, you need to let them go today, not tomorrow. You may also need to call the police or Adult Protective Services. If there is ever any question about what to do about a situation like this, the IMAGE Center is always here to answer questions and offer guidance.
Okay, so now that I’ve scared you to death, good luck!
Seriously, do what it takes to live a safe and happy life! Decide where your heart says you should live. Then find the services and people you need to support you in getting there. Have pizza and beer on Friday nights, work a full or part time job, look for someone to date, join a volunteer organization, meet friends for lunch, stop at Starbucks for coffee, check out a new church…you get my point!