All good organizations periodically review their strategy to insure that the work of the organization is conforming to their strategy and that their strategy is achieving its mission.

I?ve been asked to participate in the effort to revisit the strategy that HDSA is using to achieve its mission and to tweak it where necessary. I?m asking for your help. Does anyone want to start a dialogue to talk about HDSA and how it can realistically have a more powerful impact in your life or the life of your HD+ family and friends?

In the By Laws of HDSA, the mission of HDSA is ?The Society is a national, voluntary health organization dedicated to improving the lives of people with Huntington?s Disease and their families.?

The purpose of HDSA is delineated as

a. To promote and support research and medical efforts to eradicate the disease.

b. To assist people and families affected by Huntington?s Disease to cope with the problems presented by the disease.

c. To educate the public and health professionals about Huntington?s Disease.

What areas of HDSA?s efforts do you feel that HDSA needs to put more effort on or maybe even totally rethink? I want to walk into the meeting armed with a list of how HD family members expect to partner with HDSA. HDSA can only be effective if it achieves its mission of improving your life.

If you?re not comfortable with sharing your thoughts publically then please send an email to me at stevei@hdac.org with your ideas ? or you can use the private IM on this board to share your suggestions.

I started a similar thread awhile back when I joined the HDSA board, so I will be dusting off my notes from that short effort, but this time the information gathered will go directly into refining HDSA?s strategy. Also, if you believe that HDSA is doing an awesome job then please let me know. Everyone wants to hear an attaboy and I?ll be happy to share it with the Board.

Steve

Hey Steve,

the only thing that i can think that the HDSA is lacking is the very personal way that the HDAC is not. The HDSA website ( i confess, it has been a couple of months since i looked, and i am not looking now to see if it has changed) seems to be more based on the reasearch and fund raising, (necessary, but!) than the families' lives that we deal with as the day to day goes. It seems more like just an informational area, and not a personable area. That could be okay, i guess, but i never go there, since i can get what i need from the HDAC.

Don't know what this is worth, but thought i would put my penny's worth in.

Thanks for all you and Marsha do-you guys are awesome.

Hugs,

Suzanne

Oops.... KNEW i needed an edit, and could not see it! I meant, that the HDAC does NOT lack in the personal touch. It is like family here....

that is what i meant!

(what a dumbass...)

Suzanne

That's what I read. I would normally confess that I have developed a special talent for not seeing things I don't want to see. But I'm trying to set that aside for this thread.

I agree totally with Suzanne.

I checked both sites out before I joined one - and thought HDAC might be more compassionate.......

jl

while we're talking about the website I do think the NYA section could be improved. Youth websites are cropping up (Scotland, Canada, Aussies) providing a lot more than just info. I think the NYA website could look great and be really inviting to young people, there's so much you could put on there which isn't on right now. Hopefully that's being worked on already, we're working on doing the same here right now.

Tc, Matt.

[www.hdyo.org]

I think that the issue of Long Term Care has to be one of the top things to be advocated for.

On points on items 2 and 3, we need help with getting patients in and out of care facilities, be it hospitals or nursing homes.

It's absurd what people like myself, Eric, Judyf, and others have had to go through to "discover" what help is out there. It was a trial and error process that could have been more streamlined, because honestly, the variables in most of these situations are few.

At the very least, it would be nice to compile a list of all the HD friendly care facilities per state. It would also be a resonable request to establish some type of cooperation between the COE's and these targeted homes. Establish a class or video on the special considerations for HD in the care environment would be a minimum requirement. A lot of normal homes are totally unprepared for the HD patients.

That would relieve a lot of stress on caregivers if we knew where we could go and who to talk to instead of weeding through a system that is clueless. We need a place to start that can be achieved with simple polling. Even a detailed examination of postings on this site would open a lot of eyes.

People don't know what to do when it reaches a certain point where the caregiver is overwhelmed and can't find relief in the "normal" channels. We have these thread on almost a weekly basis. This can lead to a lot of suffering for everyone involved.

My biggest feeling about the HDSA is the education part. I am getting the feeling that more and more people are more educated about HD and finding information away from the HDSA. Especially general HD thought. HDSA needs to catch up. It's not whether they agree or not.. or feel things are thought of the way they "should" be. I think the HDSA should facilitate families helping families more. We have too many non-family members with shallow help and shallow discussion compared to the need. Groups are ok... but families can answer the tough stuff better.. and know what they are hearing better.

I think Suzanne has stated it well. The HDSA feels impersonal. Not bad.. just not inviting.. sort of neutral. I think just an admission of that would help planing. Very far away from cutting edge.

I also have a couple of questions about the board Steve. Without access to you, how does one communicate concerns to the board? Who is on the board? Where are the bios? I see a list of names. Do we know when they meet? What they discuss? How do we know what they think and why? Can they produce minutes to be seen? Local school boards do that in the news paper... it's not a word for word recording.. just an overview of the business.

Also, I see the mission statements... then I see the employees. I don't see job titles that correspond to the missions in any proportion. If we are leaving the heavy lifting for the mission to be local, why are regional employees not mission based. Why two layers of money making and no layers for mission? Natl and regional. How many people for 6-10 million dollars a year? And what good are regional people if the business is by phone and e-mail? I have been to 5 board meetings and no regional person is there. To me there is is no difference in having someone in New York or in Grand Rapids or Dubai. A phone call is a phone call and an e-mail is an e-mail.

I know there are probably answers and reasons to these things. It's about perceptions. What question can I get answered most quickly if I call the 800 number? "Where can I send $50 to the HDSA?" How many people can answer that, and how many can give me nursing home information? If there is one who can answer... is there a second if she's at lunch? How many clicks to get personal help and how many to donate? Who is personal to me? What about the HDSA is personal to me? And if I don't have interest in fund raising.. what use am I to the HDSA if I would want to be of use?

Louise Vetter, the CEO of HDSA, facilitates communications with the Board, if you ask her to share something with the Board I have no doubt she will. HDSA Chapters have ready access to Leon Tibben who is on the Board. Of course, as a last resort you still have me. There are several board members as you know and you?ll find them listed on the HDSA site at [www.hdsa.org]. Walt Johnston is the current Chair but he will soon be replaced as Chairman by Don Barr. Obviously the bio's aren't there, but I'll check to see if they can be provided.

The question regarding Board transparency is an interesting one that was discussed among the board members within the last couple of weeks. I?ll make sure that the board is aware that there is a public interest in this during the strategy review. When the Board meeting was held at the last National Conference a good chunk of it was open for public attendance. There were a few ?guests? that listened in but I don?t think it was advertised as ?open? until the conference started. I?ll also check to see if the upcoming national conference Board meeting is also going to be open to the public. I suspect it will be.

Additionally I believe it was decided that there was going to be a "Meet the HDSA Board of Trustees" session like there was a couple of years ago.

Your question about the perceived incongruence between mission and operations is exactly why the strategy of HDSA is being revisited and a marvelous opportunity to resynchronize some areas that are off track. Damned good questions ye be asking and they will be shared by me in the first meeting coming up.

Have I been accused of being wordy again?.. The hazard of having a once every 5 year question asked...

If "wordy" means "rambling" then er, yes.

See how I can summarize?

Hi Steve,

Along with the listing of HD friendly docs/nursing homes, maybe a listing by state of assistance (both governmental and otherwise) available to PHD's and their caregivers.

Tim is finally divorced, thus making him eligible (I hope) at this point for Medicaid to supplement his Medicare. I am about to begin navigating the system without much information about what he may be able to qualify for.

Right now, I could use a hand around here doing a few things for Tim, finding someone to give me some respite care and the like. Working full time and taking care of Tim and now trying to assist Mike...well it leaves me quite depleted.

A one stop place like HDSA with links to my state and what it offers in the way of help (or not!) would ease my way a little.

Thanks for all that you and Marsha do...it is much appreciated.

Carla

In this week alone, I have had 2 separate families tell me that their NEUROS told them that....
1. HD skips every other generation

2. That someones spouse is not showing signs of HD even tho he has gone from living in what everyone would consider normal living conditions to living on his parents sofa in their basement with urine and excrement on his clothing, and has started beating his wife. He does NOT have physical symptoms and HAS tested positive.

What can the HDSA do to better educate these idiotic Dr's? The first family BELIEVED that it skips every other generation.. very dangerous!



Edited 1 time(s). Last edit at 04/02/2010 07:21PM by mrspatwolf.

We gotta get these doctors ed-i-kated 'bout HD.

The georgia chapter website is bunked? there is not much help here in atl at all.

i also have been turened down 4 times for medicaid and foodstamps. then they told me hd was NOT terminal! I call and call the social worker at hdsa and keep getting sent in a loop with no help. its so overwhelming.

well stevei,

just to add something to what kag2000 is saying here,
how bout a 'Peoples Referral Guide'...

maybe we could have a board where people could list doctors.
clinic, services, or help lines, even health food stores,
that have been either 'helpful', or 'useful' to hd persons
in our own state and towns.
so than i could go on it, and look at:
san francisco bay area, and see if any others in my vicinity.
can recommend someone, or some place that can help me
in my area.... maybe i could recommend a doctor, a clinic,
a transportation service, or a food bank, even a church
or outreach service...

------------------------------------------------------------------
hdsa is so...clinical, and sterile, and technical...
IMHO... its all jibberish when you know nothing about it.
it takes time and effort to figure out some of the lingo,
and comprehend the process, and even than, some of us
really cant wrap our minds around it.
there was a link posted here, to a nova program,
showing a video on how rnai works and all that...
frankly, that taught me more in that little kindergarten video
than anyone else has...

so, i can tell you, when i was frantically looking years
back about this disease, i was both disgusted, and frustrated
with hdsa, it told me NOTHING... nothing that i wanted to
know in that moment.
i found you guys by the way, and you gave me a safe nurturing
place to lay my troubles... thank you again...



Edited 1 time(s). Last edit at 04/03/2010 12:17AM by skmf12.

HEY I, how bout posting this on Caregivers?

Well, I need to move on to other projects this weekend. But I wanted to give everyone an update on what I've collected thus far. I've tried to recategorize the issues according to mission purpose. What do you think? Does it include your issues and your concerns? Do you feel I misrepresented something? I feel I need to apologize to someone because something like this always comes across as a bit on the negative side because there are so many opportunities for improvement.

It's been a challenging year for HDSA. We've gone through a turnover at the CEO level at the same time we've been struggling with a challenging fund-raising environment. And even with that, if you've been involved with the HR.678 lobbying efforts then you know how much work the HDSA staff has been doing to make surpass their own expectations. And that effort has been totally a family services effort.

As Eric pointed out, if you're in the U.S.A. then HDSA is YOUR organization and its up to you to mold it in your collective image. So please join this discussion.

Opportunities

This section summarizes the general feeling of the community in regard to how HDSA is fulfilling its stated purpose.

Items flagged with an ** are known to have been an area targeted for improvement since 2005.

Purpose: Promote and Support Research and Medical Efforts to Eradicate Huntington?s Disease

The general perception of the HD community is that this is the primary focus of HDSA. It is through this effort that the goal of providing ?hope? to HD families is achieved. The general consensus is that HDSA is doing a good job of encouraging basic research via its support of the Coalition for the Cure. HDSA has historically provided a pivotal role in facilitating shared research and is seen as having had great success in this area.

The research reports given at the HDSA National Conference have always been a source of excitement and hope for HD families.

With CHDI now playing such a public and key role in this area HDSA is now evaluating if it needs to retarget its focus or continue with the same programs.

Expectations

? Continue to fund research that will have the mostly likely success of resulting in treatment or cure for HD.
? Continue to encourage collaborative HD related research.
? Help to educate, prepare and encourage the HD community to participate in HD clinical trials.
? Quarterly issues of the Marker
? Improve Web access to layman friendly research updates **

Purpose: Assist people and families affected by Huntington?s Disease to Cope with the Problems Presented by the Disease

The general perception of the HD community is that HDSA is doing little to directly fulfill this purpose. There is recognition by most that HDSA is indirectly fulfilling this purpose via its support of the Centers of Excellence.
However, the Centers of Excellence are few and due to inadequate funding, these COE?s are able to service a small community of HD families.

Expectations

? HD families want a better relationship with HDSA. When they email HDSA asking for help they expect and deserve a response. They shouldn?t need to cc Louise to get a response.
- Issue: Concerns about privacy laws
- Issue: Hindered by a fear of aggressive fund solicitation from HDS National Office
- Issue: Need to reach beyond the communities serviced by COE?s
? Web access to a central database of HD Resources. Including state nursing home listings, available adult care, benefits, respite care, etc.
? Create more HDSA Centers of Excellence
? Dedicate an HDSA National Office staff person to making the Centers work better
? Dedicate an HDSA National Office staff person to facilitate family and patient care. This person should be a trained social worker.
? Provide legal resources for families at the HDSA National Office level, or be able to direct families to legal resources that can assist them regarding legal issues, patient rights, wills, etc.
? Provide resources on health and long term care insurance issues, financial planning
? Patient care guide for families to improve the quality of life of both the HD patient and the caregiver.
? HD Patient care video(s) for families, COE?s, patient advocates, nursing homes, etc.
? A ?Care Package? for regional reps to provide to their chapters with manuals, materials, forms, tools, policies, CD ROMS, video, etc
? More scholarship funding for HD families for attendance to the National Convention
? Video record the National Convention sessions and make them available via the Web to families that could not attend.
? Have a live Webcast for the general sessions and major HD sessions.
? Monthly message from HDSA National to be included in chapter emails and emails sent from national to those who subscribe to National?s email publications.
- Issue: Because of concern about aggressive fundraising tactics by HDSA many chapters have to maintain a local email list that they cannot share with HDSA National Office.
? HDSA needs to provide clearer guidance to the Centers of Excellence.
? COE?s appreciate the funding offered, but it is still short of what is needed.
? HDSA needs to facilitate the implementation of telemedicine for outlying patients.
? Easy email registration, via available postcards at national conventions and COE?s.
? COE?s deal with the problems of family dynamics that result from the loss of function/independence and personality change that accompanies the diagnosis of HD and the ability to care for the HD patient at home. Related clinical matters such as genetic testing and when to inform children, marital and role changes and copying with such, setting up treatment and appropriate pharmacological management. HDSA can provide materials to help with educating patients in these areas.
? Networking between chapters and COE?s needs to be encouraged.
? There is confusion about what funds support the COE, what funds support the Chapter, and what funds filter up to National to fund operations and research.
? HDSA should be the patient advocate for complaints registered by HD families about doctors that are not doing the right thing regarding HD patients and HD caregivers.
? HDSA should encourage doctors to consider the family as part of the overall care of the HD patient. Too many times doctors forget that they get the patient face to face for 10 minutes and family members are begging to be asked how things really are.
? There are volunteers available in the HD community that HDSA is not taking advantage of. This includes both fund-raising volunteers as well as volunteers who want to help in other ways.
? There are opportunities to improve the HDSA Web site in regard to supporting HD youth.

Purpose: Educate the Public and Health Professionals about Huntington?s Disease

HDSA provides education materials but these tend to be out of date and sometimes difficult to acquire.

Expectations

? Use HDSA Centers of Excellence as clearinghouses of free and current information
? Help families with nursing home issues
? Build a network to get greater political influence
? Expand the mailing list of ?The Marker? in order to educate more people about HD
? Easier access to the Physicians Guide to Huntington?s Disease
? Information Web portals maintained and hosted by the HDSA Centers of Excellence
? Video overview of HDSA
? Return to offering a National Health Care Professional?s day at the National Conference.
? Many physicians still lack accurate basic knowledge about HD. HDSA needs to reach those doctors to provide information that they will readily accept.
? COE?s need more direction and guidance from HDSA.

Operational Infrastructure

Although operational infrastructure doesn?t fall into any of the purposes of HDSA it is critical that the infrastructure that is put into place to fulfill the purposes of HDSA is effective so that the staff of HDSA can focus on fulfilling its designated purpose.

Risks

? If the infrastructure is weak then the purpose cannot be fulfilled.
? Infrastructure is sometimes the ?fun? part of the job so often infrastructure competes with purpose for the attention of the organization.

Expectations

? Nationally produced fundraising materials
? Nationally produced fundraising training
? Standardized look for all HDSA Chapter communications.
? Provide annual, monthly and/or quarterly financial reports and a clear disclosure of the financial picture of HDSA.
- Note: Such information on all registered charities is readily available as a public document prepared by independent organizations such as Guidestar and Charity Navigator.
? Formally refer to HDSA as ?Huntington?s Disease National Society of America? and each chapter as ?HDSA Chapter?.
? Facilitate communication with HDSA Chapter presidents and HDSA COE via regular conference calls, web-casts and video conferencing. **
? Return to holding National?s Annual Meeting at the Centers of Excellence
- Note: I don?t know what this is.
? A message from the CEO, admitting the challenges, but clearly explaining how HDSA is moving forward.
? Communicate clearly any donor match incentives
? Create signature program to brand HDSA nationally.
? Separate support from solicitation in communications
? Create and share a clear and comprehensive description of the policies and proxcedures which address the perceived complicated reimbursement/financial relationship between Chapters and National Office.
? Provide timely reimbursement from HDSA National Office to Chapters and an explanation of the process to correct and prevent misunderstandings.
? Assist with board development on the HDSA chapter level
? Some HDSA Chapters are seen as very effective while others appear to be dysfunctional.
? HDSA Board members do not seem to be accessible. How does one have their concerns expressed to the Board? It would be nice to have the bios published on the HDSA Web site.
? Some in the HD community would like to know when and where the board meets so that they can stand outside and protest. (I made that up).
? The regional infrastructure does not appear to be mission oriented.
? Some chapters are not seeing the involvement of regional staff.

Hi Pat. My registration to the HDCaregivers was interrupted when my laptop crashed. I haven't had an opportunity to set myself up again so that I start receiving emails from HDCaregivers again. It's on my "to do" list.