Part One - Equipping Yourself and Preparing Your Approach

A diagnosis of Huntington's Disease in the family can be so devastating and life changing that it seems as if there would be a team of people ready to step in and help you find the resources you need for yourself or your loved one. Unfortunately, there is not. Resources are available but they are often hard to discover and there is no continuity of care - you have to put it together service by service. You will find people who have never heard of the disease or - sometimes worse - have just a little knowledge of it and because of this will deny benefits or tell you that the person doesn't quality when in fact he or she does.

A detective and an advocate

Despite the difficulties, there are more resources available than you think. The secret to finding and securing resources and benefits is to accept your role as a detective and an advocate. Recognize that this is a time consuming process and one that will go on indefinitely as needs change. Don't be discouraged! Once you understand the process and get organized, you can be successful and it definitely gets easier over time.

Your detective tools are:

1. The Internet - you will find information about Huntington's Disease, Social Security, Medicare, Medicaid, state resources and programs, and non profit programs. Here on HDAC we have links on our home page, our Organizations page, as well as in our FAQ section. Probably the best search engine is google at www.google.com . Put in all the search terms that apply - for example if I want to find resources in Delaware for the disabled, I would search for "state of Delaware disability".

2. Networking - join Huntington's Disease support groups or medical support groups for people with neurological disorders. Talk to the people in your local chapters for ALS, Parkinson's Disease, and Alzheimer's about resources as well as the Huntington's groups.

3. The telephone - you'll be calling lots of people in your state, including the Social Security personnel, possibly Medicaid if the person is low income, your state Division of Aging, Health and Social Services, and local nonprofits.

4. A notebook - When locating resources and dealing with people who control benefits, I have found it to be very valuable to get a notebook and write everything down. Name, organization, date, time, phone number.. What I asked them, what they said, whether any follow up is planned. If someone can't help me I always ask if they can suggest someone who can. Take lots of notes. You may think you'll remember what you need to know but it quickly gets overwhelming if you don't write it down.

5. A filing system - start assembling and filing documents you will need. Birth certificates, marriage certificates, divorce decrees, insurance policies, the HD test results are some of the commonly requested documents. Keep a copy of the person's resume because dates and places of employment will be needed. Grab a copy of the doctor's professional card for address and phone number and keep a record of doctor visits.

6. A fax machine (if you can possibly afford it). This saves a lot of time. Someone can fax you forms right away. If you are working with someone to establish eligibility and they need a document, you can fax what you have right while you are talking to them and find out whether this will satisfy the requirements or whether you need to get more information to them. Fax machines can cut days out of the process. This is important because the details of your situation will be fresh in people's minds and because there is often a time limit to establish eligibility. For example, here in Delaware, a Medicaid application with all the necessary supporting documentation must be completed within a month or you have to reapply and start over.

   A fax machine can also be used to make copies of forms and documents and you will need to do this a lot!

Your advocacy tools are:

1. Knowledge about Huntington's Disease - you will need to know as much as you can about the disease so you can advocate for what you or your loved one needs and - very important-because you are going to have to educate others about the disease to get help.

2. Determination - If everyone who qualified for services and benefits accessed them, the system would collapse. This is why it's not easy to get through the bureaucracies; rules and procedures are designed to discourage those with 'casual' interest. Unfortunately, they also discourage needy people, people with cognitive problems, and exhausted caregivers. Make up your mind early that you are going to keep at this.

   Organization is the key to working through the 'system.' There will be calls to make, documents to find, forms to fill out but all the same you will need to work, give care, cook dinner, get some sleep, take care of the children, etc. It may seem that it's an impossible task to keep at the work but here's where your notebook comes in. Keep reviewing it, make a list of what needs to be done, and make sure you do a little every day. Put out what you need to do the next day before you go to bed and be ready to do it. Have the name and phone number of the contact you need to call or put out the form, envelope, and stamp that needs to be finished and mailed or assemble the documents that need to be faxed. Then you will do it first thing and not be overwhelmed.

3. Being proactive pays off - It is always easier to anticipate and prevent problems in establishing eligibility for benefits than it is to appeal denials.

   Find out in advance what is needed. Ask lots of questions! "How will you determine eligibility? Are many people turned down for this benefit? Why does that happen? Try to get written information about eligibility requirements whenever possible. Read them and re-read them.

   If there is some problem with eligibility, find out how it can be dealt with. For example, my mother in law's small life insurance policy would have prevented her from applying for Medicaid. I pointed out that she had bought the policy so that there would be funds for funeral costs and asked if we had to cash in the policy and use it for her care or if there was someway to cover funeral costs as she wished. We found out that she could use the cash value of her policy to purchase a nonrefundable burial policy so that is what we did before applying for Medicaid. Again, asking questions helped prevent a potential problem. I asked if there was any limit on the burial policy. At that time the upper limit was $5,000. A larger policy would have disqualified her - but I wasn't told until I asked.

   Talk to your doctor's staff to make sure they send all the relevant medical records. One family had to file an appeal after being turned down for disability benefits. It turned out that the doctor's office staff had sent medical information about injuries from an old auto accident, not the diagnosis of Huntington's Disease and assessment of progression!

4. Love and caring - The most tedious and frustrating work is made easier when you remember that you are doing this for someone you love. If you are searching for resources for yourself, remember that you are important and deserve help. Further, once you learn the system, you can help others in your support group or post what you've learned on the Internet.

Your demeanor

A positive demeanor will be more helpful than you might think.

1. Even though those you are dealing with may cause you a great deal of frustration, be unfailingly polite. You do not want to give anyone to an excuse to hang up on you or dismiss you as a 'crank'.

2. Appeal to the expertise of the person you are dealing with. For example, "Mrs. Smith, you've been helping the disabled get services for years and I'm a novice. Do you have any advice for me about …."

3. Make it clear that you are going to be persistent. People in human services are overworked and there is always the temptation to send someone with a 'complicated' case to someone else so they can deal with several people whose situations are more straightforward. Further, there's a danger that people with HD will be turned down for services because the criteria isn't a one to one fit. They need to know that they will not be saving any time by 'dismissing' you because you will persist. Again, be pleasant about this.

   For example, I told the people involved in the determination of Social Security Disability before they sent him for testing, "My husband is clearly disabled and unable to work so we need to be sure that he is being given the right tests to reveal the extent of his cognitive deficits." This let them know that I would be protesting inadequate testing in advance (I did) and that I would most certainly be appealing a denial. His claim was accepted on the first try.

4. Educate others in a way that doesn't make them feel inadequate. "Huntington's Disease is rare and even most doctors haven't encountered it, so you may not know that…"

5. Thank people for their help. First, because this is a nice thing to do. Second, because you want them to know that we Huntington's Disease families are appreciative people. Third, because you may need their help again.

Filing out Forms

You may want to make a copy of any form that you are required to fill out to obtain benefits and then fill out the copy first. Then you can review what you've done to see if you've been clear and comprehensive. If you are working with a social worker you can have him or her review it as well.

Make a copy of every form that you fill out before you mail it. You will see this form or similar ones again and again and it will save time to be able to just copy your previous responses. Also, if a benefit is denied, it will be helpful to see what you wrote. Perhaps they've overlooked information that you've provided or misinterpreted something or it may be that you haven't explained something fully.

Notarizing

You may be required to have forms or copies of documents notarized, either to verify a signature or show that the copy is of an actual official document. If you go to a notary, you will be required to pay a small fee. Fees can mount up if you have to have a lot of documents notarized. One alternative is to go to your bank. Banks have personnel who serve as notaries and many will let their regular customers use their services for free as a courtesy.

Documenting What You have Done

Once you have mailed a form or document, add this information to your notebook. If you are applying for a benefit and eligibility ceases after a deadline, make sure you take it to the post office and mail it in such a way that you will have a record of when you sent it and who received it. For example, my husband applied for disability retirement with his company but his application was temporarily misplaced. Fortunately, we had a copy of the application and a record of when it was sent and received.

Dealing with Ill-Will

Never underestimate the degree to which problems can be caused by snafus, errors, lack of information, overwork, misunderstandings, etc. This is why I advise you to be proactive. Most of the time you will be dealing with people who mean well but just may not know what they need to know to help.

However, occasionally you find a person who has some kind of agenda that has nothing to do with you but which will cause a lot of trouble. When that happens, you need to verify everything they tell you because you can't trust it. You may need to go to that person's supervisor and you may need to enlist an advocate. Keep a daily record of your contacts with that person - what they said and did and what you said and did.

For example, my mother in law's nursing home was generally excellent. However, at one point, a new administrator threatened to discharge her for being abusive to other residents. She was in a residential area with Alzheimer's patients and 'disputes' over rooms, walkers, and other property were quite common because people were confused. My mother in law was quite weak at that point, couldn't walk, and any damage she might do to someone else was very limited. I checked with the staff and found out a typical incidence of my MIL's 'abuse' was that she slapped at a resident who tried to pull her out of her wheelchair in the mistaken belief that the wheelchair belonged to her.

I called the administrator to try to work this out and she informed me that there was a possibility that the attorney general's office would be bringing criminal charges against my MIL. I knew better. I happen to know our Attorney General, a lovely caring woman who took care of her own grandmother with Alzheimer's, and I knew it wasn't true. At this point, we called for a meeting with the Office of the Nursing Home Ombudsmen and everything was resolved. There were no more threats about discharging my MIL. The real agenda was that as a Huntington's Disease patient, she took 'too much' of the staff's time. Fortunately, the staff was excellent and did take good care of her.

In another example, we had serious problems with a social worker in a psychiatric facility. My MIL was first hospitalized in a psychiatric facility for diagnostic purposes since she wasn't taking care of herself properly, denied that anything was wrong, and refused to accept help. We had no family history of HD and therefore suspected Alzheimer's since my MIL was in her seventies at that point.

After consultation with the psychiatrist who had found significant brain damage through an MRI, the decision was made by the family to go to nursing home placement since she already needed 24/7 supervision. The hospital social worker disagreed with the doctor and the family and she insisted that my mother in law needed only assisted living at best. Interactions became more and more bizarre and I suspected that she might sabotage the nursing home placement. I discussed the situation with the admissions director of the nursing home that we had selected and made sure that all medical records were received in advance. Sure enough, the social worker called and asked them NOT to admit my mother in law because she 'wasn't that sick.' The admissions director told her that the medical director had already reviewed the medical records and that they disagreed with her. I don't know what the social worker's agenda was. It might have been ongoing conflict with the particular doctor, perhaps it was a personality conflict with me, or it may have been frustration because it was several weeks before a nursing home bed became available. In any case, everything worked out because the nursing home staff had the information they needed.

Most of the time you won't be dealing with ill will but it can happen and it's best to be prepared.

I hope these ideas have helped you to feel more prepared to be a successful advocate for yourself or loved one. Remember that we members of families with Huntington's Disease are all novices in this area but we all learn to do what needs to be done. In Part Two, I will discuss documenting disability, assessing needs, finding resources, establishing eligibility, and enlisting other advocates.

Marsha Miller, Ph.D.

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