Social Worker to the Rescue
Table of Contents for Social Worker to the Rescue
Here are topics contained in this hub, listed in the order written. Hope it helps you find what you are looking for more easily.
1. Who Is Tori Murrill
2. Comments about the law precluding MediCaid providers from billing patients over and above what MediCaid says is owed.
3. Medicaid and Crippled Childrens Services-In home support services, CCS, IHSS, SSI
4. Conservatorships and Attorneys-In home care, California Regional Centers, Special needs trusts, Adult Protective Services, abuse of dependent adults and elders, SSI benefits, Protection and Advocacy legal advice and assistance
5. Study needed for proximity of graduate schools to social services programs-government incompetence, CPS
6. Acne and Orthodontia-oral hygiene and age appropriate living arrangements and activities
7.Caregiving-Parkinsons, In home care, assisted living
8. Neurology Now Magazine-free publication regarding all neurological conditions, access subscription and access online
9. Health Insurance and Prescription Assistance Programs-several sites to check on benefits, how to apply.
10 Forced exercise for Parkinsons Patients-Cleveland Clinic study regarding bicycling and symptoms improvement
11. Emotional reactions to death and dying.
12. Out of State Tranfers from Institution to Instituion
13 Advocacy link and helps with insurance
14 Chronic Pain Syndromes and Disability Benefits
Who is Tori Murrill?
Hello, I have wanted to create a site to help people negotiate the maze that is the public benefits system for awhile. My Masters Degree is from Indiana University. I have a BA in English and Teaching Credential in
English from the University of California, Santa Barbara. My Masters is in Counseling and Guidance, however I spent 30 years as a social worker, and social services worker. Masters in Social Work get mad when others call themselves social worker, so as a disclaimer, let me say that I chose the title of this blog to attract readers and my job titles have often been "social worker". My areas of expertise are in Developmental Disabilites, Adult Social Services, Public Benefits, Children's Services and Medical Care. I was fortunate in my employment, to work in settings such as the Regional Center in California, where it was necessary to interface with all social services and health care systems. I retired four years ago, and will try my best to provide current information regarding any issues you might have and also welcome any contact from readers who want to add to or correct advice or statements I make, or offer additional advice. Please feel free to contact me, as I enjoy researching issues and solving problems.
Comments 13 comments
MediCaid Waiver and Crippled Childrens Services
Everytime I see a handicapped child's family having to have a carwash to pay for medical bills, I get furious. Not of course at the family, but at the system which has failed this child. While I live in California and negotiate that system much better, there are federal programs available to pay for care. Parents shouldn't have to go bankrupt, sell their home, or place the child in care to get bills paid. Social Workers are often ignorant of these programs and do not refer families. When you have a handicapped child, and voices in your head say "this can't be right" or "there has got to be help somewhere", there probably is.Here are some of the programs you can inquire about in your state.
Crippled Children's Services are in each state. CCS (in California it is called California Children's Services) should be contacted to see if your child is eligible. Many handicapping conditions are eligible for assistance with medical care. Note, it is my experience that if you have an HMO, they may not be or able to help you. However, call them. Ask to speak to a social worker/intake worker and ask your questions. They coordinate care and work with your insurance. They pay for services for uncovered children and services. They assist you in getting hooked up with the right benefits, which will lower or decrease to 0, your share of cost for medical care. That million dollar neonatal bill, can shrink significantly, or payment for multiple surgeries or efforts at gaining control of epilepsy, or payment for that wheelchair can be handled through CCS. But be sure to apply as soon as possible. In California, if your child has a developemntal disability, you can apply for the Regional Center to help your child. Also, if your child is under 3 and at risk for Developmental Disabilitiy they can receive help. CCS and Regional Center work closely to avoid duplication of funding.
Part and parcel of getting care paid for, depending on the state you are in, is the MediCaid program. Your severely handicapped child can qualify for medical care with a low, or no share of cost by applying for Medicaid, under "child only" for a child with a medical need. This only takes into account only the child's assets and income, not the parents. You apply at the county level at your Human Services Department. Hopefully all states allow this type of Medicaid (MediCal in CA) Another way, is to get your child on MediCaid is getting them on the MediCaid Waiver program. Each state has mechanisms in certain agencies to certify the child as having a certain level of disability which could qualify them for institutional care, but recognizes they could be cared for at home. (This of course is a cost savings to government, as institutional care is very expensive). It is sometimes referred to as "institutional deeming." Google the words "MediCaid Waiver" and your state to find out about your state programs. There are only certain "slots" for these programs, but there are waiting lists and they do move. The MediCaid waiver was created to allow parents to have their children treated at home and in their community, rather than being institutionalized. Again, parents' income is not taken into account.
Once you have MediCaid for your child, you will only have to pay a share of cost. Many times this is 0.Sometimes there are limits to the type of help you can get, but that is rarer than full scope MediCaid which covers most medical and related services such as speech therapy, physical therapy, etc. In the case of Medi-waiver children, it is always 0. It is against the law to bill a MediCaid patient for payment beyond the share of cost. Also, if you have costs prior to the month you apply, ask for coverage for the three prior months as well.
Once you have MediCaid, you may be eligible for the In Home Supportive Services in your state, IHSS. To qualify you have to provide care in accordance with federal guidelines (personal care for example), except in California which has a state component. You can be paid to care for your child or hire someone else. Payment to parents is a development which occurred in the past few years.
In another capsule, I will discuss Social Security. Once your child has SSI they will have MediCaid. If your child gets SSA on for example a deceased parent's account, things work a bit differently. Stay tuned.
You pay your taxes for this type of help. Don't think of it as welfare. Think of your taxes as insurance premiums. You are entitled to use the system. That is what it is for.
Conservatorships: To Conserve Dependent or Elder Adults or Not
Last night I got into an animated chat discussion with my good social worker friend, who is now a probate investigator. There was some fast and furious debating going on, so I thought I would discuss the issue on this hub. These are my thoughts and observations after 30 years of social services experience.
The state of California has some special programs in place to deal with some groups who may need conservatorships. Speak to authorities or an attorney in your own state, but bear in mind some of the following points.
Attorneys make their money by taking your or your loved one's money when you are filing for a conservatorship for someone who may not even need it. So what do you think they are going to recommend? Is it always necessary? Who needs one? Disabled adults, such as mentally ill, developmentally disabled or elderly sometimes need them, but in most cases do not. Conservatorships (some states call them Guardianships) are needed for the Person or the Estate, when there are not mechanisms in place to protect that person.
Questions and Answers
Q: My adult retarded child is said to function like a three or four year old. Surely my child should be conserved, right?
A: Why? Is that adult going to act against his or her best interests? Not usually. Typically they are protected in an environment where they cannot be exploited. This, by means of programs which allow them to have as normal a life as possible. In California and in many federal programs, most systems allow for a representative to make decisions for them. People are presumed competent under the law unless adjudicated as incompetent. That means you can say, "John, do you want me to make this decision (e.g. where to live, act as a benefits representative for MediCaid or Social Security, participate in a sheltered workshop). If John does not protest or indicates yes, he can make a mark have it witnessed and you are good to go forward with what arrangement your loved one might need. If it is a medical decision and John does not understand the procedure, hospitals have boards to make a decision on behalf of a person they deem not capable of understanding. In California, a Developmentally Disabled adult can have that decision made by the Director of the Regional Center or their designee, often the Medical Director or other staff physician.
When California began emptying its State Hospitals of patients who could better be served in the community, the patient sometimes had to have a writ of habeas corpus filed on their behalf. A non-verbal, severely retarded patient I knew signed the word "father". Staff interpreted this as a request to leave the hospital. A writ was filed, the case was heard in court, and he was able to leave the hospital setting after years of living there. He blossomed. What had been the case many times, was that well intentioned parents thought they could protect their developmentally disabled loved one from the oh so cruel world by conserving them. The consequence in some cases was the oh so cruel horror stories you saw in the news of institutionalized patients naked, sitting on the floor in their own urine and feces with nothing to look forward to but their daily gruel. Parents thought their adult children couldn't be served safely in the community and if they were behind the walls and fences of the institution they would be safe, albeit never reaching their potential. I will always recall my client who had been in the hospital for 35 years. He was a Down Syndrome patient in his early 40's who was severely retarded and not verbal. We fought the parent conservator and won. He was placed. He had never said a word in the hospital. Nor had he smiled. Upon being placed into a Group Home setting, he began singing lyrics....beautifully, and learned to use some speech and sign language, ...and smiled. Life lesson learned, tears flowing! Every human and every organism strives to reach its own individual potential. We have profoundly mentally retarded individuals living in supported living arrangements in the community, attending day programs such as activity centers and workshops as the rule now, and not the exception.
In California there is a Limited Conservatorship for Developmentally Disabled. It preserves as many rights as possible and grants the conservator powers as appropriate. For example, the conservatee might have the right to marry and have sexual relationships and fix their place of residence, but not make medical care decisions.
Here is the exception to the above thinking. If your child has been the beneficiary of funds from a lawsuit, or otherwise has large sums of money, a conservatorship of the estate is needed. Lawyers get involved. They set up the trusts. They are paid. There is payment to a trustee for managing the trust. A "special needs trust" preserves the ability to utilize public benefits and uses the trust for uncovered items, such as perhaps an automobile with a lift, adapted bathrooms, etc. The probate courts review these trusts annually and ask for an accounting. Some of the oversight has been tightened recently, as things were often a bit loosey goosey and hence exploitive. Abuse of money including trusts and estates is rampant as Adult Protective Services and District Attorneys offices can tell you. Prosecution of fiduciary abuse of an elder or dependent adult, depending on where you live, can be aggressive, or not at all. Know what is happening where you, and where your loved one, live. Go for the lowest degree of control over the estate and particularly of the person. If you are the trustee, and you pass on, or are no longer able to manage a trust, know that there will be a flock of vultures both professional and non-professional wanting to control the money. Set things up correctly in advance. No need for life-long attorney relationships, for example where the attorney is the trustee, unless there is no alternative. Sporadic help, yes.
Q. My adult child has a mental illness and uses bad judgment. He is easily exploited by others. Should he be conserved?
A. Possibly. Control the money. Control the money. Control the money. Your adult child has a right to make mistakes and learn from them. However, if it is apparent that he or she is often without food, clothing or shelter, or is a danger to themselves or others, then by all means, go for the probate conservatorship of both the estate and the person.
This brings into play what to do if you have no money. In some states, California for example, the public guardian is the agency which would file the petition, unless you have money to hire an attorney to help you. Public Guardians are often overloaded and underfunded. They have big long lists of investigations they have to carry out. There are legal aid centers which can help you prepare petitions for little cost.
When you control the money you control the person's decision making to a degree, supporting them in making positive choices in their life. "John if you don't take your medication, then you will not get any spending money this week." John will take his meds, maybe, and ultimately could live independently or in a residential arrangement. Better that than sleeping in a log and begging for food on the street. When you see a mentally ill homeless person in really bad shape, you can bet there is not enough control over his or her money. Some of them make choices based on their mental health condition, to live as they do, but if you talk with those who have overcome homelessness and gotten their mental health problem controlled, they really didn't like living like that. If you can't get John to take his medication, then all you can do sometimes is to let him bottom out...winding up homeless, in danger, and also covering yourself by alerting the Adult Protective Services program and any case manager John may be associated with. Don't give him the money except unless you can insure he will use it to buy food, and obtain clothing or shelter. Pursue any threats of physical harm to you with the police. Follow through.
Also, in general if a service provider, such as a repair person or car salesman could reasonably realize that a person is mentally impaired, it is illegal to enter into a contract with that person. This is a police matter.
Q. Is there a way to control the SSI or Social Security income my adult child obtains?
A. Yes. Best bet is to have a physician or psychologist fill out a form, obtainable from Social Security, stating that this person requires a substitute payee. Also, Social Security can accept input from a "credible source" that the person cannot manage their Social Security income or reporting requirements. Social Security will write to the person asking them to obtain a physician's statement (same form) indicating their capacity to handle their money and reporting requirements. Depending how wily the adult is, typically the doctor is going to say they can't, especially if the doctor has social or medical information about homelessness, alcoholism, etc. Some clients present very well and can convince a professional they are quite able to control their money. Ask for an APS worker to contact the doctor if you can't provide input...or ask a case manager to do it. When all else fails, then a conservatorship of the person and estate is appropriate. Even Brittany Spears needed one.
Below will be some links for you to go to in order to better inform yourselves regarding the above issues. And just a final word about obtaining conservatorships, some states seem to be unable to function without a person being conserved. I tell people from other states you don't need it for the most part in California for Developmentally Disabled. The higher functioning the client, who uses poor judgment and places themselves at risk financially, or physically, then the more likely you may need to file for Conservatorship. But for lower functioning, and compliant clients, there is really no need, as the systems in place via the Regional Center, and advocacy programs are supportive and obviate the need for conservatorships.
1. Protection and Advocacy has a lot of information regarding rights and laws regarding Mentally Ill and Developmentally Disabled. This is a federally funded agency in each state. (To find the Protection and Advocacy Office in your state put in Key Words "Protection and Advocacy" and then your state. They have clients' rights advocates and are quite accessible. Here is the link in California.
2.Adult Protective Services-put in the county where you live and Adult Protective Services to Search. Or in California click below and look for the county where you live. (By the way, you are a mandated reporter if you are any type of caregiver, paid or not in the State of California)
3.Regional Center Services in California-Click on the link below, and then click on the Regional Center Tab to find the Regional Center serving your area
4. Social Security-here you can investigate representative payee issues and any other concerns about SSI or SSA
If you want to look into their operations manual go to Social Security POMS
5. Special Needs Trusts
Here is some general information regarding Special Needs Trusts
6. How to know if a caregiver is stealing from you.http://www.care2.com/greenliving/5-signs-a-caregiver-is-stealing-from-you.html
How it Used to Be (thanks BobPaley.com)
Study Needed: Graduate Schools and Proximity to Incompetent Government Social Service Systems
Would somebody pleeeeze do a thesis or dissertation exploring the following question? Is there a correlation between the proximity of graduate schools of Social Work and a county's incompetence in carrying out the functions of their social services programs? I'm talking about programs such as Child Protective Services, Adult Protective Services, In Home Supportive Services, and eligibility for medical or financial aid.
It has been a theory of mine for awhile that with an MSW program pouring out hundreds of graduates into the counties where the program operates, you can be sure that a huge number of the lowest level positions will be filled with little or no recruiting effort on the part of that county. Recent graduates simply apply at the closest place, ie. the county social services department, and get hired. Sacramento County and all its publicized disasters come to mind.
With a huge number of inexperienced entry level social workers operating with their new diplomas in hand, a certain level of hubris occurs which remains unchecked by any supervisor. Why is this? Is it because the supervisor was either quite recently Peter principled (operating at their level of incompetence) into the position after a minimal amount of experience, or is burnt out and overwhelmed by the demands of the program? They have seen first hand how the county operated when they were social workers, and think that is how it is supposed to be. Bringing in new blood from other more successful counties might be an answer, but I'll bet promotions tend to be the rule rather than transfers from other counties. Who wants to transfer to a county where the reputation for service delivery is dismal? Are there high turnover rates in these counties? Do employees move on to greener and better operated pastures?
Protective Services workers in particular burn out at a higher rate than other workers, so the need is great to refill positions. Hey, why not hold a job fair and hire that new graduate who just walked out of the classroom and put them into your bureaucracy? Hence, a new crop of ripening but never ripe social workers is always the core of your program.
I'm not blaming the social workers or the supervisors here, but rather the fact that within these systems caseloads become unwieldy. The money is cut by the state. The cases pile up, time frames cannot be adhered to, investigations or applications cannot be completed in a timely fashion. The end result is that children remain in care longer than necessary, they are taken into care at a higher rate than other counties, children and adults can be injured, exploited or die. In home services are not provided that could prevent placement of the child or the adult. Income or medical benefits are delayed causing the applicant unnecessary distress or actually placing them in danger. Review processes do not occur until tragedy forces it to happen. This is all due to the culture within the organization.
There is plenty of structure and law in place for competency to occur. However, the organizational issues, beginning with the novice social worker trained in an environment where incompetence and/or ineffectual practice flourish, and ending with a lack of oversight, just make successful public programs impossible. Incompetence and ineffectuality are simply perpetuated.
A comparison group for this study would be the counties which are not near MSW graduate programs. Data already exist at the state level measuring outcomes for each county. Which are the counties with successes? How far away from MSW programs are they. Are there correlations between social worker experience and longevity, and supervisor experience and longevity and program success? Would new blood from outside the county help? Will someone please study this so we can figure out if recruitment, hiring and promotion criteria should be changed, thereby actually helping people, and yes, saving lives?
Control the Acne and Get Orthodontia
This is written to encourage parents of adults or children with or without disabilities to pay attention to their children's appearance. As a teenager, young adult and and then a 30 something with acne (and a teen who had orthodontia), I speak from personal experience as to the difference it made to my own self perception when it was gone.
First, as a social worker or even a person in the community, when I see with acne so severe it will scar, I always tell myself there is no excuse in this day and age for a child to have disfiguring, scarring acne. There are many treatments for acne now. The quickest and most effective is Accutane a strong vitamin A derivative. For a teenage girl, doctors may want her on birth control, even if she isn't sexually active, due to the teratogenic effects on a fetus. Accutane takes about 4 months to complete treatment and generally it is cured for life. It changes the way your skin handles oil. Doctors typically will want to try other treatments such as perhaps antibiotics, topicals,etc. There are effective over the counter treatments with Benzol Peroxide which handle it, but if you want to have it cured.... think about Accutane. When doctors tell you your child will outgrow it, that is fine, unless it is so severe that you think it will cause scarring, or unless the self-image issues are such a factor that you want something done.Press the doctor to come up a solution. Ask for a dermatologist referral if needed. MediCaid will pay for Accutane.
On Nov 16,2010 I came across this study about a purported higher risk of suicide for Accutane users. Interestingly, they were predisposed to suicide because of the acne, not the accutatne. Here is a link to the Brit. Med Journal ariticle http://psychcentral.com/news/2010/11/14/severe-acne-not-accutane-related-to-increased-suicide-risk/20884.html
I speak from experience at having only mild acne throughout my teen years which persisted into my 20's. It went away and then emerged, as with many women, in my 30's. Coincidentally I was dating a dermatologist who said he wouldn't have treated me, but my dermatologist did. I was shocked at the way I felt when it was gone within a few days. I'm in my 60's now, and it's still gone. I had not realized how much it had affected my sense of self.
With regard to orthodontia, there is nothing like straight white teeth to enhance appearance. Should your child be too disabled for orthodontia to be considered, consider veneers unless there are grinding, biting or chewing issues which would mitigate against it. How do you get it?
Fortunately most dental insurances cover orthodontia for a minor or even an adult child in the family. If you have MediCaid, it will often cover what is called a Class 3 Malocclusion. Ask your dentist to diagnose the degree of malocclusion, and then if it is severe, contact your dental insurance, or Crippled Children's Services (CCS). If you are in California, the Regional Center sometimes will pay for orthodontia when there is no other agency. You will likely have to strongly advocate for it. Also, ask your case managers (or you can too) to write letters on your behalf to charities such as McDonalds, which sponsors orthodontia treatment. You can work out payment programs with many orthodontists, including Dr. Campbells. Ask around to see which orthodontists work with disabled children. For children who are not disabled, just get it done. Find a way.
Your job is to ensure that your child learns effective dental hygiene. It may be necessary for you to carry it out for them as well, or at least supervise it. Keep it up.
Social adjustment for a disabled child is one of the most important milestones for him or her to reach. While they are usually willing to engage, often they will experience rejection from adults and children when hygiene and appearance don't meet societal norms. That is why it is so important in addition to the above, to ensure age appropriate hair styles, clothing and accessories as well as a healthy weight. It is really easy to dissuade even a profoundly retarded child from carrying around a doll or stuffed animal. Trust me, I have ensured it happened many times. You substitute, make rules etc. Remember with your typically developing child getting rid of "blanky" It is the same thing. Don't indulge the behavior. Try a purse instead of Minnie Mouse, etc.
Disabled children and adults have multiple strikes against them all their lives. Do what you can do to help them achieve their adult potential individually and socially. A well groomed, age appropriate, clear skinned, straight toothed disabled person is going to be much more self-confident and accepted in society than someone who is indulged and infantilized, and doesn't look or smell good.
The above may not seem on par with finding an appropriate wheelchair, or day program or other essential needs of disabled, but it is just as important. How your child looks and acts and "seems" to the outside world will ultimately affect the child's sense of self and self-worth, as well as how they relate to that world and operate in it.
Here is an interesting medical article from the UK exploring issues of appearance and ethics for Developmentally Disabled
Where I've Been Lately-My Life as a Caregiver
I've been away for awhile. Whew, let me breathe!!! There, that's better!! While I have always been able to help those who are disabled or their caregivers obtain services, I had to be my mom's social worker and caregiver this past week. She still lives in her own home. She is a very special senior citizen She quite elderly. She has a ton of younger friends. She is sharp as a tack, but has a great deal of difficulty walking. We put in 3 ramps, brought in her scooter which she still drives to the physical therapist, the farmers market and the dentist. We set up a staffing schedule to provide some am and pm coverage and hired a home health agency to cook up some meals to freeze so she can microwave them when no one can be there. We shopped and brought her an ice/heat pad to deal with the tendinitis from her cane. We also threw out papers and magazines and clutter, and cleared floor space to help maneuver her scooter around the house. We tried the power chair for a few days, but it is really too big for the house and a few scuffed up doors and antiques later we decided to park it back in the garage. I literally did not sit down except for about a half hour a day for some porch sitting and a cocktail (sometimes two), and helped her from 7 am to 7 pm. After providing her with the power scooter in the house, she gained stamina and was able to stay up later. She never took nap. I didn't either. I needed one. I still feel the effects nearly five days later.
My story is no different than any other caregiver only in so far as the details may differ. Caregiving is exhausting. Basically you are providing everything the person cannot do for themselves. For a person who can't walk well, it is a lot. There are other more disabling conditions such as mental disorders including dementia which make caregiving even more difficult. I feel lucky to have my mother as well as she is, and gladly am giving up my job and dedicating a week a month to care for her (she lives a day's drive away from me). My sister lives closer and cares for her also. Basically what we have done is try to provide assisted living in her own home. People think about assisted living often prior to a person needing it. However, it is much more expensive than hiring staff or agency help. When the cost of home care exceeds what it costs in assited living, then it is time to go there. Mom is on a list, and people should go look at facilites, long before it is required and get their loved one on a list. One agency I found is called "A Place for Mom". They are natiionwide provided some home health agency referrals and assisted living facilities. If possible find a facility that has a three tiered care level system. Independent, Assisted and Skilled Nursing levels. I've included links to agncies who might be able to facilitate the hunt for in home and out of home care for anyone needing the services. Also contact Visiting Nurse Services in your area.
A Place for Mom Free Assistance Finding the Right Skilled Nursing Facility.www.aplaceformom.com
CA Senior Services FREE Referral Agency for Senior Needs Perfect Placements/In Home Care...www.caseniorservices.net
Find Care for Mom or Dad Find Local Assisted Living Care Free Consumer Referral Service.www.ElderCareLink.com
Now that was just my mom's story. We are simultaneously dealing with my boyfriend's mother who is on about her 8th or 9th bout of acute to SNF and back home. She gets by with a walker.She has a house cleaner one time a week. Each time we go through this the SNF therapists say she can't be alone, live alone and needs assisted living. She is 97 years old. She has lived in her house for 75 years. Long story short, she is going home next week, with a scooter to be tried out in her home. There will be bolstered therapy-PT and OT and a referral to home health for 30 days to provide further input. Simultaneously we are coordinating assisted living in case we need to go that route. We just tell both our parents the money they have is for them, and they should use it.
That wasn't the only geriatric we were dealing with. Our 17 year old dog has been on "anti-alzheimers" meds and arthritis meds for years. She has been visually impaired and very deaf for at least 2 or 3 years. She has been forgetting to go outside for about a year, choosing the kitchen floor and occasionally the carpet for urinating. She had a seizure and a work up about two weeks ago. Of course all tests were perfect. She had been walking much better since her meds were changed to a cox 2 inhibitor. I got home Sunday afternoon. On Monday morning at 4:30 am she was falling and couldn't walk and was squealing. We called the vet who met us at 5 am, and we had her put down. I'm glad she waited for me, so I had time to say goodbye, and so my boyfriend didn't have to face it alone. She was his little homeless dog and we have had her since she was a young puppy. We miss her very much.
FROM ANNE TERGESEN "COMPENSATING A FAMILY CAREGIVER" link here:
Free Subscriptions to Great Magazine-Neurology Now
I wanted to inform everyone of this great discovery. It is an extremely helpful publication which is basically free if you are a person, caregiver, friend or family member of, or professional interested in, neurology. It is published by the American Academy of Neurology. You can sign up online by going to their website subscription page at:
The articles are very informative, covering all neurological conditions and issues surrounding them. They do not talk down to you, but give you really valuable information. In addition, you can read it online, and access past issues. One article which you should access online, if you have financial issues related to medical care, is one by a health writer named Kimberlee Roth. In it she describes strategies to deal with your medical cost and debt issues. There are many helpful websites. If you have trouble accessing the article, please email me and I will help you to locate it. I strongly urge you to subscribe to this free publication if you fall into any of the above categories (who doesn't). If by chance you do not fall into the categories it is 19.00/year.
A Quick Guide to Check Out Health Insurance for You or Loved one
Recently in discussing the need for Health Insurance for a friend who is 60 years old and has none, I recalled these helpful sites. They are not just for seniors though are run by a senior agency.
1. The first is Benefitscheckup.org
Don't be confused if you are routed to something that is from Illinois. This is good for the whole USA. You can find out all programs that might find you RX help, insurance help, Utilities help and housing.
2. Another great tool is http://www.ehealthinsurance.com/
This program will help you find affordable health insurance.
3. In addition, do not presume you aren't eligible for MediCaid in your state. Many people are eligible even if they have a share of cost. There are a multitude of MediCaid programs in each state, for low income, disabled, and seniors. If you have MediCare and qualify for MediCaid, you are only obligated to pay the Medicaid Share of Cost which is low. You have paid your taxes over the years and if you need this taxpayer funded system, you've paid your dues. Use it. You apply through your county human services (welfare) department. Normally, though there are exceptions, benefits can be retroactive for 3 months. So if you break your leg, apply, and you should be covered. Hospital social workers should help direct you to any resources. But it is better to apply and have the benefit in advance.
4. Check out this new program. It is a drug benefit card for underinsured and uninsured to cover drug costs. You can download a free benefit card and receive discounts up to 85% on generic and name brand drugs at over 50,000 participating pharmacies nationwide, according to their press release at http://www.pr-inside.com/ramsell-public-health-rx-launches-nationwide-r836383.htm
They have a link to the ramsell website where you can find out more about the program and print out a benefits card. I would appreciate any feedback from anyone using this benefit, so I know if it works. There are other drug discount programs so be able to check them out completely. Make sure beflore you sign up for a drug discount program, that you are not eligible for the program below, which provides the most direct route to free prescriptions provided by the drug companies. Good luck.
5. Partnership for Prescription Assistance- https://www.pparx.org/Intro.php
This is where you should first start before signing up for any other discount programs.
6. A new government website to help you figure out where you can check for health insurance is www.healthcare.gov It is very easy to use, you do not have to register. Just go to it and put in your needs and it will give you constructive ideas to check out.
7. I recently stumbled on concerns expressed by some members of a genetic disorder who were experiencing loss of insurance. Here are some links from genome.gov. Basically it appears it is illegal since legislation was passed to discriminate on the basis of a genetic disorder. Under Obamacare this will likely become a non-issue soon.
- Facts about genetic non-discrimination acts http://www.genome.gov/10002328#al-1
- Cannot be disc. Against for employment http://www.genome.gov/11510229
- State laws enacted re insurance http://www.genome.gov/10000879
- Most important State by state legislation. May not refuse to enroll based on genetic info of likely disability (I have not reviewed all states, but check here for yours) http://www.genome.gov/PolicyEthics/LegDatabase/PubSearchResult.cfm
Forced Exercise and Possible Improvement In Parkinsons Symptoms
On NBC news a couple of weeks ago, there was a spot about a researcher at Cleveland Clinic who noted that when he tandem biked with a friend with Parkinsons Disease at a higher RPM rate than the person could have gone himself, the symptoms disappeared. He is now researching it at the Clinic, and has apparently been doing so for a couple of years, but only recently hit the mainstream news. He is trying various strategies to create the forced RPMs of 80-90 RPMS for a 40 minute to 1 hour duration. The effect of this was equivalent to a deep brain implant with about a 35% improvement. The improvement falls off if the exercise stops. Here is one article about it. You can find others using a keyword search.
With this in mind, I began strategizing how I could approximate this for my mom. While trying to invent a motorized version in my head, Skymall Magazine email popped into my inbox. On a lark, I searched for a pedaling machine, and voila! up popped a motorized peddle machine which even an old lady on her couch can utilize. I ran it by her neurologist, family doctor and the physical therapist, and with the caveat of not too much too soon, and to evaluate any weakness or balance problems from working out the legs, we went for it. It arrived and mom is excited. I will do a follow-up note here after we see how it works. Here is the Skymall ad and we think for the price, it is worth giving it a shot.
Followup Note. This peddaling machine works great. There is a decline, when mom doesn't use it, but when she gets back to using it 3-4 times a week we notice the difference.
The Week of Deaths-A Personal Note
Hoping this is somewhat cathartic, because I continue unexpectedly to experience a subdued mood, tearfulness, and lethargy. During the second week of April, I visited my mom. My ex-brother-in-law was dying. I had not seen him in 30 years. He was a funny talented person who was still in my heart. My sister was visiting and keeping us posted, but he was comatose. He had an awakening at one point, and we were hopeful, but alas, he succumbed, one can only say to an overabundance of sensitivity which he tried to manage as best he could. We spoke to his parents and that was healing to an extent. Shortly before that on that day, we lost a good friend where my mother lives. While not unexpected ,she was a vibrant advocate and caregiver to my mother at times and will be sorely missed. She had lost her husband, also my mother's helper for several years, just a year prior. They collected heart shaped rocks and we all chose one at her memorial. Note to you all, collect heart rocks. On the Friday, my boyfriend called to say my first cousin, for whom I had provided care and help, died unexpectedly. This was a complete shock to me. His cause of death is still being determined. While in contact with my cousins about this, we learned that our other cousin's husband had died on the Tuesday. OK, that was four. In informing the cousins again, I learned our other cousin's father in law had died in late March. This went over my head, until a google alert which I have for a surname popped into my mailbox. That was five. Upon returning home, my cousin's daughter and I and my cousin's son's mother cleaned his apartment. There were several days of scrubbing and organizing and packing involved. There is some more frustration associated with all this, but I'm sure I just exceeded the Guinness world record for buying sympathy cards for all concerned. My brother-in-laws Yahoo Groups page has so many tributes, that I can only read it sporadically. My cousin's situation is not completely resolved for me in terms of practical aspects and emotional aspects. I need naps. I know this is normal, but it feels so awful. I intend to watch how it progresses. It is a lesson for me in grief.
Progress in Grief and News
It's four months since I last posted the above information. I am feeling better, though still subdued. Mom is now in her second Board and Care since May. She is now having some mental issues either associated with her Parkinsons or her meds. She has had to switch neurologists and he seems very sharp on the meds, according to my sister. So much of mom's care falls toward my sister who is closer. I thnk this is always the case for the closest child, and it is stressful. The only upside, is she is more hands on and close to what is happening. Me, I just worry and plan my next flight to go see my mother. Again I find comforing articles in the Neurology Now magazine, that always seem to have something to do with our currrent situation. (I've referenced this before and how to get it for free elsewhere in the blog, it is great). I have planned a short getaway. My sister has planned a long getaway. We are glad mom is safe, but our work is not done, even though she is in a good facility. All for now.
Answer for son Wanting to Move Mother from State Hospital in Fl to CA
When asked about how to move an extreme bipolar mother closer to family in California, this is how I responded.
I’ve done this with 2 developmentally disabled brothers from Texas. It is possible your mother does not need a state hospital. Florida may be one of those states where that is where they put them. The transfer may be complex. I am assuming you live in California. I also have a friend who did this, moving her schizophrenic brother to CA from SC.
- Get a copy of the latest assessment from the Florida hospital social worker. You need to know how dangerous she may be to herself or others, and does she run away.
- Contact the Mental Health Association which is a support group of family members of persons with mental health problems and ask for their guidance.
- Contact the agency below depending on where you live. Talk to them about the situation http://www.dmh.ca.gov/docs/CMHDA.pdf
- Contact the Medi Cal office and the Dept. of Mental Health Services at the county level. Remember your rationale is to get your mom closer to family. There are possibly case management programs that can help you locate an appropriate placement.
- Go to the Care Licensing State of California Dept of Social Services website and go to the section that says Find a Facility and put in your zip code. It will give you a list of facilities that take care of the kind of problem your mom has.
- I recommend an agency called “A Place for Mom”. Contact them. They can help you for free locate an appropriate placement to meet your mom’s needs. If she needs a locked facility, they can help with that too.
- Once you have the placement in mind, ask if they will take her for the SSI/SSDI income rate. Go interview them.
- Home is where a person or her representative chooses for her to live. She could possibly stay with you for a couple of days and on day one, notify Medi-Cal and Social Security she has moved to California. Otherwise move her right into the provider’s home. Social security will take a month or 2 to change her rate to the California rate. If the provider won’t wait for it, then loan your mother the money if you can, and have her sign an agreement that she will pay you back once her social security is increased. Date it and show it to Social Security.In California she will also be entitled to a State Social Supplemental amount. You will need to interview the Medi-Cal representative to get an idea of the amount. Should you decide to try to handle her yourself, you or her care giver would be entitled to receive In-Home Supportive Services.
- To do a state hospital to state hospital transfer is tricky but not impossible. Contact the admissions coordinator at a StateHospital close to you and see if she meets criteria. State Hospitals are now very specialized. Here might be something that helps with transfers. http://www.cdph.ca.gov/pubsforms/forms/CtrldForms/hs602.pdf.
- My best advice is to find a facility first that can meet her needs. Use the resources I gave you to find some place suitable. The move her. Then contact the agencies and say, she’s here. If she blows the placement they will take it from there.
- Email me directly if you need further help.
Advocacy with Health Insurance
Some good tips contained in this Yahoo article.
Here is the text incase the link disappears
By Suz Redfearn
Health insurance companies like to keep secrets. And they like to save money. Example: You have surgery, and weeks later you get a bill for using an out-of-network anesthesiologist. Ridiculous, right? You didn’t choose who put you under, so you shouldn’t have to pay extra. But your insurer sent the bill anyway, hoping you wouldn’t notice.
Fighting back against this kind of trickery—and winning—is a lot easier than you think, says Kevin Flynn, the president of Healthcare Advocates, a Philadelphia-based firm that helps patients wrangle with their health plans. We checked with Flynn and other insurance-industry insiders, lawyers, doctors, and regulators to uncover nine little-known ways to get the health coverage you deserve—for less.
Health.com: 8 steps to saving money on all your your medical expenses
Don’t pay if you don’t have a say
When you purposely see an out-of-network doctor, your plan usually makes it clear that it’ll cost you. But when you have surgery, the hospital chooses the anesthesiologist. If you get that annoying “out-of-network” bill, Flynn says, draft a strongly worded letter stating you had no say about the anesthesiologist—in-network or otherwise—and, therefore, won’t pay any additional fees.
“If you don’t have direct control, you are not liable,” Flynn says, adding that this tactic is likely to work every time, but few consumers know about it.
You may be eligible for more coverage
Depending on your state, you could be eligible for more benefits than your plan is telling you about. Take Maryland, for instance. Health plans operating there must pay for expensive infertility coverage. But one state over, in Virginia, they don’t. It’s unlikely that your plan is trumpeting info about state-mandated coverage, though. It’s up to you to get the scoop.
One good place to check is Families USA, a consumer group that keeps tabs on state rules, suggests Kevin Lembo, Connecticut’s official health-care advocate for consumers. Another option: Contact your state’s insurance commissioner.
Health.com: How to cut insurance costs
To get tested, talk up your symptoms
Your insurer doesn’t want to pay for a colonoscopy if it thinks it’s not necessary. But if you believe you need one, here’s how to get it covered: Talk to your doctor in detail about your symptoms and why you think you need the test. Your plan has to pay for it if you have gastro complaints, health experts say. (Only 21 states require insurers to cover colonoscopies for general screening.)
Stall first, answer questions later
When Wendy Decenzo became pregnant with twins, she wasn’t worried about health insurance. Her husband, Chris, had made sure to get a health plan that covered pregnancy well before they started trying. But when Wendy began going for prenatal visits, coverage was denied. Their plan, Blue Cross of California, wouldn’t say why. Instead, the insurer asked the Decenzos to sign release forms allowing the plan to view their medical histories, which the law says are private.
Chris believes the company was looking for any info that the Decenzos may have accidentally omitted when they applied for coverage. If an omission were to be found, the couple might have been denied coverage. “It seemed like a fishing expedition in order to deny us,” Chris says. So they refused to sign, and three months later the plan started paying for the prenatal appointments, even going back and paying for earlier visits that hadn’t been covered. Flynn says lots of insurers try this trick, but since their review process usually lasts only 60 to 90 days, they often drop the inquiry after that. Sometimes, procrastination pays.
Health.com: 4 ways to get medical expenses covered
Letters are your best bet
It may seem a bit inconvenient, but the old-fashioned letter is by far the best way to communicate with your health plan. “Don’t do anything over the phone. It takes forever and when you’re done there’s no record of it, so it didn’t happen,” says Rhonda Orin, a Washington, D.C.–based attorney and the author of Making Them Pay: How to Get the Most From Health Insurance and Managed Care.
Letters almost always get a response, adds Lembo, the Connecticut health-care advocate. Some plans will answer email, but many won’t. And to whom, exactly, should you address your mail? Experts recommend following your plan’s appeal process for letters and sending copies to your state insurance commissioner. Also, keep copies of every letter you’ve sent your plan and everything they’ve sent back. That way, when your insurer says, “We never said we’d cover that,” you can say, “I have it right here in writing.”
Doctors can be good weapons
You just got four massage sessions, under doctor’s orders, for lower-back pain—but your insurer refuses to pay for them? Ask your doctor for help. He can tell the insurer he’s going to complain to the state board that regulates health plans.
“Health plans may not fear you, but they do respect the board,” says James Moss, MD, a retired Kentucky surgeon. He intervened on a patient’s behalf and, by pressuring the board, helped the patient win coverage. Another option: Say you’ll call your congressman and/or state Medicare office to lodge a formal complaint, Dr. Moss says.
Health.com: How to stay insured if you get fired
Caveat: Don’t actually contact your state board yourself if a claim is denied. Janice Weiss, a Jupiter, Fla.–based attorney who fights health plans for consumers, says some of her clients who went this route ended up hurting their cases when the state agency ruled their claims invalid; that left them little recourse with their insurance companies. Instead, while working your plan’s appeals process, just suggest you may take the matter to your state.
A little research can go a long way
If you want a special CT scan or MRI, your doc probably won’t authorize it unless it’s an absolute must. Persuade her with expert info from the American College of Radiology's Appropriateness Criteria, says Anne Roberts, the executive vice chair of the department of radiology at the University of California, San Diego.
Used primarily by doctors but open to the public, it’s an up-to-date list of the types of imaging that are right for various conditions. Arming yourself with the info doesn’t guarantee coverage, but it’s a proactive step in the right direction.
There are ways to get drugs cheaper
Doctors are often wowed by the latest and greatest drugs, which tend to be the most expensive. Make sure these newer, high-end meds are what you need before you leave the doctor’s office. Sometimes your insurance plan won’t pay for them at all; other times it’ll charge higher co-pays.
In many cases, drugs have generic versions that are just as effective but cheaper than the newer ones. Always ask your doc (or pharmacist) for generics. And if you really need a medicine that doesn’t have a generic version, order it by mail. Many plans have a less-expensive mail-order pharmacy option. Another prescription trick for people who have chronic conditions like allergies: Ask your doc to write you a prescription for two or three months’ worth of medication instead of one. Good-bye, extra co-pays.
Health.com: 5 tips for buying meds online safely
An advocate can help you win
Imagine being turned down for coverage after running up $125,000 in medical bills. That’s what happened to the parents of a daughter with anorexia just before they sought help from Kevin Flynn, of Healthcare Advocates. For $400, he took over the fight with their insurer and—after a year’s worth of combat—won.
Flynn is a patient advocate, part of a growing industry that makes its money from helping you. Some advocates help you interact with your doctor, while others specialize in insurance disputes. Most of all, firms like Flynn’s keep the letters going out on your behalf, saving you time, energy, and headaches. “The insurers know that advocates know the laws, the regulations—things a regular consumer might not know. That makes them nervous,” Flynn says.
Health.com: Money-saving ideas that put your health at risk
Advocates can even get policies changed. One of Flynn’s clients, who had rectal cancer, was having trouble getting his insurance plan to pay for a new radiation therapy. The insurer claimed the treatment wasn’t ready for prime time, but Flynn found six studies showing its usefulness for the disease, got the coverage—and got the insurer to rewrite its policy.
To find an advocate, contact the Patient Advocate Foundation, says Laura Weil, the interim director of Sarah Lawrence College’s Health Advocacy Program. Another helpful resource is the Society for Healthcare Consumer Advocacy.
Also try checking with the medical association for a particular condition, like the Multiple Myeloma Association or the National Association of Anorexia Nervosa and Associated Disorders; many of these groups keep lists of advocates.
Chronic Pain Sydromes and Disability Benefits
Now with Facebook there are so many ways to link to others and get information. For example with fibromyalgia there is Foods For Fibromyalgia, Fedup with Fibromyalgia etc. Here is a a great tool to take to your physician that follows criteria for social security disability. Ask the doctor to complete it so they do not have to be contacted later in the pursuit of your benefits http://www.cssa-inc.org/Patient%20Resources/disability_form.htm
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