LEGAL PROTECTIONS IN MANAGED HEALTH CARE.
A FOCUS ON ADDITIONAL PROTECTIONS OFFERED BY
THE STATES.


>> LEX:  WELCOME EVERYONE TO AN ILRU WEBCAST
ON LEGAL PROTECTIONS IN MANAGED HEALTH CARE, A
FOCUS ON ADDITIONAL PROTECTIONS OFFERED BY
STATES.

AND OUR WEBCAST TODAY WILL BE PRESENTED BY
WENDY WILKINSON, BUT BEFORE I INTRODUCE WENDY,
THERE ARE A FEW ACKNOWLEDGMENTS AND GROUND
RULES THAT I'D LIKE TO LAY OUT FOR EVERY ONE.
FIRST OF ALL, I'M LEX FRIEDEN, DIRECTOR OF ILRU AND
IT'S A PLEASURE FOR US TO WORK TOGETHER WITH
OUR PARTNERS AT THE RTC ON INDEPENDENT LIVING
AND THE RIIL PROJECT AT KANSAS, THE UNIVERSITY OF
KANSAS.

THE RTC ON MANAGED HEALTH CARAT THE NATIONAL
REHAB HOSPITAL, AND THE RTC ON HEALTH AND
WELLNESS AT OREGON HEALTH SCIENCES UNIVERSITY.
TOGETHER, WE HAVE DEVELOPED THIS FORMAT AND
WE HOPE THAT YOU ENJOY TODAY'S PRESENTATION.

ULTIMATELY, THIS EFFORT IS SPONSORED BY NIDRR,
THE NATIONAL INSTITUTE ON DISABILITY AND
REHABILITATION RESEARCH.

THIS SERIES OF WEBCASTS IS A PART OF THE NIDRR
INITIATIVE TO DISSEMINATE RESEARCH FINDINGS TO
CONSUMERS, SERVICE PROVIDERS, ADVOCATES, AND
OTHERS WHO HAVE A STAKE IN THE FINDINGS OF
RESEARCH.

SO WE'RE VERY PLEASED AT ILRU TO FACILITATE THIS.

A FEW NOTES ON THE MECHANICS OF THE WEBCAST.
FIRST OF ALL, THIS IS A NEW TECHNOLOGY, AND AS
SUCH, WE WOULD LIKE TO HAVE ANY
RECOMMENDATIONS THAT YOU MAY HAVE ABOUT
NAVIGATION DURING THE WEBCAST, ABOUT
INTRODUCTIONS, ABOUT THE PROCESS IN GENERAL, OR
ABOUT FUTURE TOPICS.

WE ARE USING REALTIME CAPTIONING AND FOR THOSE
OF YOU WHO WANT TO HAVE ACCESS TO THAT, YOU
MUST USE REALPLAYER.

REALPLAYER IS AVAILABLE FOR DOWNLOADING.
MOST OF YOU PROBABLY HAVE IT UP AND IT CAN BE
USED TO DISPLAY THE CAPTIONING.
YOU CAN MINIMIZE THE CAPTION WINDOW IF YOU
DON'T WANT TO VIEW THE CAPTIONING, BUT
PERSONALLY, I FIND IT VERY, VERY USEFUL.

THE PROCESS FOR SUBMITTING QUESTIONS, WE'D LIKE
TO HAVE INTERACTIVE WEBCASTS, AND THE
INTERACTION REALLY DEPENDS ON YOU.
I KNOW HAVING EXPERIENCED THESE INTER--
SO-CALLED INTERACT TIF SESSIONS MYSELF BEFORE,
SOMETIMES IT'S DIFFICULT TO MOTIVATE YOURSELF TO
ASK A QUESTION.

YOU PROBABLY THINK SOMEBODY ELSE IS GOING TO
ASK THE SAME QUESTION, AND YOU DON'T NEED TO
MOTIVATE YOURSELF, BUT WE'D LIKE FOR YOU TO,
AND TO DO SO, DURING THE PRESENTATION, PLEASE
CLICK ON ILRU@ ILRU.ORG.

AND YOU CAN E-MAIL QUESTIONS TO US LIVE AND
WE'LL SCREEN THOSE QUESTIONS TO THE DEGREE
THAT OUR PRESENTERS HAVE THE TIME TO ADDRESS
THEM, WE CERTAINLY WILL.

IF YOU CLICK ON THE ILRU@ ILRU.ORG ITEM ON YOUR
FRONT PAGE OF THE WEBCAST, THEN YOU'LL GET A
PREADDRESSED E-MAIL POP UP THERE.
SO PLEASE USE THAT AND SEND US YOUR QUESTIONS.
IF WE CAN'T ANSWER THEM DURING THE WEBCAST,
WE'LL TRY TO DO SO ON LINE AFTERWARDS.

DURING THE PRESENTATION, YOU'LL FIND THAT WE
USE A KIND OF RELAXED FORMAT.
THE PRESENTATION WILL NOT EXCEED 90 MINUTES.
THE INTERACTIVE QUESTION AND ANSWER PART WILL
BE INCLUDED IN THAT TIME.

IF IT TURNS OUT THAT THERE IS NOT A LOT OF
QUESTIONS OR ISSUES TO ADDRESS, IT COULD BE
SHORTER.

IT'S ALSO IMPORTANT FOR ME I THINK TO
ACKNOWLEDGE ALL OF THE GREAT ILRU TEAM THAT'S
BEEN A PART OF THIS DEVELOPMENT EFFORT,
PARTICULARLY NOTING LAUREL RICHARDS, MARJ
GORDON, SHARON FINNEY, RACHEL KOSOY AND DAWN
HEINSOHN.

IT'S A GREAT GROUP OF PEOPLE TO WORK WITH AND
I'M PROUD TO BE ASSOCIATED WITH THEM.

ALSO ASSISTING US IN THIS PROCESS AND THEY ARE
VITAL IN THE PROCESS FROM BAYLOR COLLEGE OF
MEDICINE IS ROB DICKEHUTH AND MARIE BRYANT.

BEFORE I INTRODUCE WENDY, LET ME SIMPLY INVITE
YOU TO ATTEND THE NEXT PRESENTATION ON THE
WEBCAST THAT'S FEATURING ANDREW HOUTENVILLE
OF CORNELL UNIVERSITY AND YOU CAN GET THE
WHOLE CALENDAR FOR FUTURE PRESENTATIONS
RIGHT ON OUR WEBSITE AT WWW.ILRU.ORG.
YOU CAN FIND LINKS TO IT ON THE WEBCAST HOME
PAGE.

NOW, IT'S A REAL PRIVILEGE FOR ME TO INTRODUCE
OUR PRESENTER FOR TODAY, AND THAT IS WENDY
WILKINSON.

I THINK WENDY IS THE PREEMINENT EXPERT ON THE
AMERICANS WITH DISABILITIES ACT IN THE UNITED
STATES, NOT ONLY IS SHE A LAWYER WHO
UNDERSTANDS THE TECHNICAL ASPECT OF THE LAW,
BUT SHE IS ALSO A REALLY GOOD TECHNICAL
ASSISTANCE PROVIDER.

SHE IS ABLE TO INTUITE ASPECTS HAVE QUESTIONS
THAT PEOPLE CAN'T REALLY ARTICULATE.
IT'S A VERY COMPLICATED ISSUE SOMETIMES THAT
WENDY WILL HELP US WORK OUR WAY THROUGH AND
I REALLY RESPECT AND APPRECIATE HER GUIDANCE
AND HER EXPERTISE.

WENDY IS THE DIRECTOR OF THE SOUTHWEST
DISABILITY AND BUSINESS TECHNICAL ASSISTANCE
CENTER AND THE PRINCIPAL INVESTIGATOR FOR ONE
OF OUR PROJECTS WITH THE RESEARCH AND TRAINING
CENTER ON MANAGED CARE AND DISABILITY
RELATING TO LEGAL PROTECTIONS FOR PEOPLE WITH
DISABILITIES.

SHE IS A MEMBER OF THE FACULTY OF BAYLOR
COLLEGE OF MEDICINE AND SHE RECEIVED AN
OBERMANN FELLOWSHIP IN 1997 TO STUDY GLASS
CEILING ISSUES ON THE EMPLOYMENT OF PEOPLE WITH
DISABILITIES.

SHE WAS KIND ENOUGH TO INVITE ME TO CO-AUTHOR
THE PAPER THAT SHE DID FOR THAT FUNCTION, BUT I
ASSURE YOU, THE SUBSTANCE AND CONTENT OF THAT
WERE HERS.

IT'S AN HONOR FOR ME TO INTRODUCE TODAY WENDY
WILKINSON.

WENDY.

 WENDY:  GOOD AFTERNOON EVERYONE.
WHAT I'M GOING TO DO IS TAKE PROBABLY THE FIRST
HALF HOUR, 35 MINUTES AT THE MOST, AND WHAT I'D
LIKE TO DO IS GO THROUGH THE PRESENTATION THAT I
HAVE PREPARED AND THEN AFTER THAT TIME IS TO
TAKE YOUR QUESTIONS.

SO IF YOU WILL BEAR WITH ME, I'M GOING TO GO
THROUGH THAT PRESENTATION AND TODAY I'M GOING
TO BE FOCUSING ON STATE LAW PROTECTIONS AND
WHAT THE LAW LOOKS LIKE IN THE DIFFERENT STATES.
FIRST I'M PROBABLY GOING TO REVIEW A LITTLE BIT TO
BUILD UPON PRESENTATIONS THAT HAVE GONE ON
BEFORE THIS IN ORDER TO HAVE A LITTLE BIT OF A
TRANSITION.

AS WE ALL KNOW, OBTAINING THE HEALTH CARE THAT
YOU NEED CAN BE A DIFFICULT EXERCISE, ESPECIALLY
WHEN YOU HAVE A DISABILITY.

ONE DOESN'T RECEIVE THE SERVICES THAT THEY NEED
SIMPLY BECAUSE THEY ARE MEDICALLY NECESSARY.
INDEED, WHAT FALLS UNDER THIS UMBRELLA AND
WHO DECIDES THAT IS OFTEN SUBJECT TO DEBATE.

ONE MUST BE A SKILLFUL ADVOCATE AND BE ABLE TO
NEGOTIATE THROUGH A MAZE OF RED TAPE IMPOSED
BY THE MECHANISMS THAT ARE AN INTEGRAL PART OF
THE STRUCTURE OF MANAGED CARE ORGANIZATIONS
THAT DO DOMINATE THE HEALTH CARE LANDSCAPE
TODAY.

THIS CAN BE ESPECIALLY DIFFICULT WHEN YOU'RE
DEALING, YOU'RE ILL, YOU'RE NOT FEELING WELL.
SO IT'S ALWAYS IMPORTANT NO MATTER WHAT STATE
YOU'RE IN IS TO PREPARE YOURSELF CAREFULLY.
REMEMBER, YOU ARE THE EXPERT ON YOUR HEALTH
CARE NEEDS.

MAKE SURE YOU PREPARE YOURSELF.
REMEMBER THOSE THAT MAY BE MAKING DECISIONS
ABOUT WHAT YOU WILL NEED IN YOUR HEALTH CARE
ARE NOT GOING TO HAVE THE EXPERTISE THAT YOU
DO.

ALSO, EDUCATE YOURSELF ABOUT HOW YOUR
MANAGED CARE ORGANIZATION OPERATES.
IS IT A MEDICAID HMO OR A PRIVATE HMO?
WHAT THEN ARE THE LAWS THAT GOVERN IT?
IN EACH STATE, MEDICAID IS GOING TO BE DIFFERENT,
AND THERE ARE A LOT OF TOOLS OUT THERE ON THE
WEB AND WE'RE GOING TO BE POSTING THESE ON THE
WEBSITE LATER ON.

YOU ALSO WANT TO GO THROUGH AND DISCOVER
WHAT OPPORTUNITIES YOU MIGHT HAVE TO ADDRESS
COMPLAINTS INTERNALLY.
WHAT GRIEVANCE PROCESSES EXIST?
YOU WANT TO EXHAUST ALL HELP LINES.
YOU WANT THEM TO KNOW YOU AND YOU WANT THEM
TO TREM BL WHEN THEY HEAR YOUR NAME.
KNOW YOUR HEALTH PLAN, CAREFULLY STUDY ANY
DENIAL NOTICES THAT YOU MAY BE GETTING AND ALL
THE WHILE MAKE NOISE.

THE SQUEAKY WHEEL REALLY DOES GET THE GREASE.
IT TOOK A COLLEAGUE OF MINE 32 CALLS TO GET AN
ORTHOPEDIC SHOE WHICH WOULD PROMOTE THE
HEELING OF HIS TOE WHEN WAS A COMPLICATION OF
DIABETES.
HE WAS PERSISTENT.
IT TOOK A PERIOD OF A COUPLE OF WEEKS.
HE DOCUMENTED ALL THOSE CALLS.
THAT WAS IMPORTANT.
SO THOSE THINGS I ENCOURAGE THAT YOU EXHAUST
ALL OF THOSE THINGS BEFORE YOU ATTEMPT TO GO TO
THE NEXT STEP AND LOOK AT THE LEGAL
PROTECTIONS.

ONCE YOU'VE EXHAUSTED ALL YOUR INTERNAL AND
INFORMAL GRIEVANCE PROCEDURES, IT'S TIME TO
TAKE IT UP A NOTCH.

YOU WANT TO LOOK AROUND FOR WHAT LEGAL
PROTECTIONS, ADMINISTRATIVE GUIDANCES,
MEDICAID DIRECTIVES WHERE IT'S APPLICABLE,
WHATEVER YOU CAN THAT'S GOING TO HELP YOU
ADDRESS YOUR BARRIER.

THERE IS A PATCHWORK OF STATE AND FEDERAL
LEGISLATION THAT PROVIDES PROTECTION FOR
CONSUMERS IN ACCESSING HEALTH CARE, BUT KEEP IN
MIND THAT THEY ARE ALL VERY DIFFERENT.
WE DON'T HAVE ANY SINGLE POWERFUL MANDATE.
IN EACH STATE THERE ARE SOME NICE EXAMPLES IN
OUR STUDIES THAT WE'VE COME ACROSS, I CAN'T
SPEAK TO HOW THEY ARE REALLY WORKING IN
PRACTICE, BUT ON PAPER, SOME OF THEM LOOK LIKE
THEY'VE BEEN THOUGHTFULLY CONSIDERED AND
THAT THEY COULD BE VERY HELPFUL, AND THE
BOTTOM LINE IS THEY ARE AVAILABLE AND PEOPLE
NEED TO UNDERSTAND THEM AND USE THEM.

IT'S ALSO IMPORTANT TO NOTE THAT WITH MEDICATED
EACH STATE HAS A LOT OF DISCRETION IN DESIGNING
THEIR MEDICAID PROGRAM.

IN EACH STATE THE MEDICAL NECESSITIES VARY.
AND IT'S IMPORTANT TO KNOW WHAT THE LAY OF THE
LAND IS IN EVERY STATE AND THERE ARE A LOT OF
PLACES WHERE YOU CAN FIND THAT OUT.

WHAT I'M GOING TO BE TALKING ABOUT ARE YOUR
STATE LAW PROTECTIONS AND WITH THE INVITATION
YOU SHOULD HAVE RECEIVED A U. R. L. THAT WILL
CONNECT YOU TO THE LIST OF STATE LAW
PROTECTIONS AND ON THIS LIST IT'S SUMMARIES OF
SOME OF THE DIFFERENT PROTECTIONS THAT ARE OUT
THERE IN YOUR STATE AND SO I WOULD ENCOURAGE
YOU TO REVIEW THOSE, BUT ALSO LOOK AT OTHER
THINGS.

LOOK AT THE WEBSITES OF YOUR P. AND A.'S TO FIND
OUT WHAT THEY ARE ARE DOING, WHAT DIRECTIVES
THEY MAY HAVE ISSUED, LOOK AT HCFA'S WEBSITE
AND THERE ARE A LOT OF TOOLS OUT THERE THAT
CAN HELP YOU.

AGAIN, AT THE STATE LEVEL, ONE THING I WANT TO
POINT OUT BEFORE I ACTUALLY GO THROUGH AND
HIGHLIGHT SOME OF THE STATE PROTECTIONS THAT
ARE AVAILABLE, IS VISIT THE HCFA WEBSITE.
WITH STATE LAW, IT'S IMPORTANT TO NOTE THAT YOU
CAN USE IT -- LOOK AT IT IN TERMS OF WHAT YOU
MIGHT BE ABLE TO DO AT A MACRO LEVEL.

THAT IS, YOU'RE GOING TO HAVE MUCH MORE POWER
TO AFFECT WHAT STATES ARE DOING, WHAT KINDS OF
LAWS THEY ARE ISSUING IN REGARD TO CARVING OUT
DIFFERENT PROTECTIONS FOR PEOPLE WITH
DISABILITIES.

INDEED, FOR INSTANCE, IF YOU LOOK AT FLORIDA AND
WHAT THEY HAVE DONE, YOU'LL SEE THAT THERE ARE
SOME CARVEOUTS AND SOME SELECTED BENEFIT
MANDATES FOR PEOPLE THAT NEED ORTHOPEDIC
DEVICES AND OTHER THINGS GEARED TO SOME
SPECIAL POPULATIONS THERE.
SO LOOK AT IT IN TERMS OF MAYBE WHAT POWER YOU
MIGHT HAVE TO INFLUENCE POLICY IN YOUR STATE.

ANYWAY, THERE IS SOME GUIDANCE FROM HCFA AND
IT TALKS ABOUT IMPLEMENTING THE B. B. DA AND THE
1915 AND 1115 WAIVERS AND ITS REGOT SOME GOOD
GUIDANCE ABOUT HOW YOU CAN BE CREATIVE IN
DESIGNING AN M. CO SYSTEM THAT REALLY MEETS
THE NEEDS OF PEOPLE WITH DISABILITIES.
THEN ON AN INDIVIDUAL BASIS LOOK AT THE STATE
LAW PROTECTIONS, SEE WHAT'S OUT THERE AND WHAT
YOU CAN USE IN YOUR STATE IN ORDER TO GET THE
HEALTH CARE THAT YOU NEED.
AGAIN, IT'S A PATCHWORK AND WHAT I'M GOING TO DO
IS JUST HIGHLIGHT SOME OF THESE.

FIRST, WITH MEDICAID, EVEN IF YOU'RE A MEDICAID
HMO, YOU ARE ENTITLED TO A FAIR HEARING.
THIS IS SOMETHING THAT WAS SUBJECT TO DEBATE
AWHILE AGO, BUT IT'S BEEN DECIDED THROUGH
LITIGATION.

SO EVEN IF YOU'RE IN ONE OF THOSE, IF YOU EXHAUST
ALL INTERNAL PROCEDURES, YOU CAN GO THROUGH
AND GET A MEDICAID -- GET A FAIR HEARING WHERE
YOU CAN DEBATE IF YOU'VE GOTTEN A DENIAL.
SO THAT'S ONE AVENUE YOU CAN PURSUE.

NOTE AS I GO THROUGH THESE PROTECTIONS THAT
SOME ARE NOT MANAGED CARE SPECIFIC, AND ALSO
THEY DO COVER A WIDE RANGE OF HEALTH CARE
THAT IS OUT THERE.

WHAT'S GOING TO BE EXCLUDED FROM THESE, AND
AGAIN ALTHOUGH THEY ARE BROAD SCOPE, ARE
WORKERS' COMP RELATED PLANS, LONG TERM PLANS,
DISABILITY INCOME PLANS AND SINGLE DISEASE AND
OTHER TYPE PLANS.

SO WHEN YOU ARE READING THROUGH THAT, JUST
LOOK CAREFULLY AND MAKE SURE YOU UNDERSTAND
WHAT'S COVERED.

I GAVE EVERYONE AN OUTLINE THAT WAS POSTED ON
THE SITE, AND WHAT I'M GOING TO DO IS JUST KIND OF
GO THROUGH AND I'VE CATEGORIZED THE DIFFERENT
STATE LAW PROTECTIONS THAT ARE AVAILABLE, AND
THESE DEAL WITH ACCESS AND I'M GOING TO TALK
ABOUT SOME PROVISIONS THAT GUARANTEE SOME
CONTINUITY OF CARE, HOW YOU CAN OBTAIN
STANDING REFERRALS, HOW YOU CAN GET SPECIALIST
PCP'S, SOME STATES MIGHT HAVE ACCESS PLANS,
WHAT SOME COMPLAINT PROCESSES ARE, ASIDE FROM
THOSE THAT MAY ALREADY BE IN PLACE INFORMALLY,
WHERE THERE ARE SOME GUARANTEES AND WHERE
SOME STATES HAVE SOME SPECIFIC TIME LINES.
I'LL ALSO TALK A LITTLE BIT ABOUT SOME DISCLOSURE
PROVISIONS, EMERGENCY CARE, SOME STATES DO
HAVE SOME NONDISCRIMINATION MANDATES,
ALTHOUGH THEY ARE NOT PARTICULARLY STRONG,
THE ONES THAT I HAVE SEEN.

ALSO WHERE THERE HAS BEEN SOME CARVEOUTS
WHERE CERTAIN BENEFITS ARE GUARANTEED, AND
ALSO WHERE SOME STATES REGARDING FORMULARIES,
THAT MEANS PRESCRIPTION DRUGS, WHERE THEY
REQUIRE M.CO'S TO OFFER DRUGS THAT MAY NOT
APPEAR ON A LIST FOR CERTAIN REASONS.

FIRST I'M JUST GOING TO START WITH THE FIRST PART
AND TALK A LITTLE BIT ABOUT ACCESS AND STANDING
REFERRAL AND WHAT THIS MEANS IN SOME STATES,
THERE ARE SOME LAWS OUT THERE THAT ALLOW YOU
TO GO STRAIGHT TO YOUR SPECIALIST, AND I SEE THAT
IN ARKANSAS, CALIFORNIA HAS A PARTICULARLY
GOOD PLAN, AND WHAT THEY SAY IS THAT YOU CAN
HAVE A SPECIALIST AS A PCP, AND THERE ARE CERTAIN
HOOPS YOU MIGHT HAVE TO GO THROUGH, BUT FOR
INSTANCE IN CALIFORNIA THE PLAN HAS TO HAVE A
PROCEDURE THAT PROVIDES FOR A STANDING
REFERRAL IF THE PCP DETERMINES IN CONSULTATION
WITH A SPECIALIST THAT THIS PERSON NEEDS TO HAVE
ACCESS TO A SPECIALIST ON AN ONGOING BASIS.
AND HERE IS AN IDEAL PLACE FOR A PERSON TO GET IN
THERE AND REALLY EDUCATE THEIR PCP AND MAKE
THEM UNDERSTAND HOW IMPORTANT IT IS THAT THEY
DO HAVE ACCESS TO A SPECIALIST.
SO HERE YOU HAVE SOME POWER TO GO
INDIVIDUALLY AND GET THAT.
NOW, THERE ARE SEVERAL STATES THAT DO HAVE
THIS PROVISION.
SO I WOULD CHECK YOUR STATE AND SEE IF YOU DO
HAVE ACCESS TO THAT.


>> RACHEL:  WENDY, I'M SORRY TO INTERRUPT YOU.
THIS IS RACHEL, THE QUESTION ASKER AND I KNOW
YOU ASKED TO HAVE THE QUESTIONS AT THE END BUT
WE ARE GETTING A COUPLE OF QUESTIONS ALONG THE
WAY THAT ARE REALLY JUST ASKING IF YOU COULD
PLEASE SPECIFY WHAT SOME OF THE LINGO AND SOME
OF THE ABBREVIATIONS ARE.
THERE ARE QUESTIONS ABOUT HCFA, M. CO AND PCP
AND CARVEOUT.

>> WENDY:  LET ME GO AHEAD AND DO THAT.
WHEN I TALK ABOUT MCO, I'M TALKING GLOBALLY
ABOUT MANAGED CARE ORGANIZATIONS AND THAT
SUCH A HUGE UMBRELLA AND THAT'S GOING TO
COVER YOUR HMO'S AND ANY SORT OF PLAN THAT HAS
ANY DIFFERENT FEATURES IN IT THAT IMPOSE COST
CONTAINMENT AND THAT KIND OF CONTROL BOTH
WHAT THE PROVIDER DOES, HOW IT'S PAID AND KIND
OF OVERSEES SOME OF THOSE DECISIONS.

WHEN I TALK ABOUT PCP, I'M TALKING ABOUT YOUR
PRIMARY CARE PHYSICIAN.
THIS IS THE DOCTORS THAT YOU GO TO THAT ALMOST
GETS APPOINTED TO YOU.
GENERALLY, THEY ARE GENERAL PRACTICE TIONERS,
NOT SPECIALISTS AND THAT'S THE PERSON YOU NEED
TO GO TO FIRST AND THEY ARE THE ONES THAT DECIDE
WHETHER OR NOT YOU CAN GET ACCESS TO
SPECIALISTS.
IT'S REALLY IMPORTANT THAT IF YOU DO HAVE AN
OPPORTUNITY, INTERVIEW YOUR PCP AND MAKE SURE
THEY UNDERSTAND YOUR DISABILITY BECAUSE THEY
ARE THE ONES THAT HAVE THE POWER, AGAIN, TO SEE
HOW IMPORTANT IT IS THAT YOU MIGHT HAVE ACCESS
TO A SPECIALIST, WHATEVER SPECIALIST THAT MIGHT
BE BECAUSE OF YOUR DISABILITY.

SO THEY CAN CAUSE A BOTTLENECK OR THEY CAN
ALSO SET YOU FREE TO SEE A DOCTOR THAT YOU
MIGHT NEED.
WERE THERE OTHER ACRONYMS?

>> RACHEL:  I THINK THE ONLY OTHER ONE WAS HCFA.

>> WENDY:  AND THAT'S THE HEALTH CARE FINANCING
AGENCY, AND ACTUALLY, THEY HAVE CHANGED THEIR
NAME, BUT THEY ARE UNDER HEALTH AND HUMAN
SERVICES, AND THEY ACTUALLY PROVIDE LIKE
DIRECTIVES AND KIND OF TECHNICAL ASSISTANCE,
AMONG OTHER THINGS, AND WHAT THEY DO DO, FOR
INSTANCE, WHEN THE OHM STEAD DECISION ROLLED
OUT THEY DEVELOPED A LOT OF POLICY LETTERS AND
INSTRUCTED STATES WHAT THEY NEEDED TO DO TO
IMPLEMENT OHMS STEAD.
WHEN I REFERRED TO THEM EARLIER, THEY
DEVELOPED SOMETHING THAT STATES COULD USE TO
USE THESE IMMEDIATE INDICATE WAIVERS AND WHAT
THESE MEDICAID WAIVERS I REFERRED TO EARLIER
ALLOWED STATES TO DO IS IN ESSENCE BE CREATIVE
ABOUT HOW THEY CAN STRUCTURE THEIR MEDICAID
PROGRAM TO BE FRIENDLIER, IF YOU WILL, TO PEOPLE
WITH DISABILITIES.
AND THAT IS TO CARVE OUT, YOU KNOW, SPECIAL
PROGRAMS WHERE PEOPLE WITH DISABILITIES CAN
RECEIVE BETTER SERVICES.

I KNOW THAT THERE IS A LOT OF ACRONYMS AND
ESPECIALLY WHEN I BRING -- INJECT MEDICAID INTO
THIS, IT IS A LITTLE BIT COMPLEX.
SO AS I MOVE ALONG, IF I INTRODUCE ANYTHING ELSE,
I PROMISE I WILL EXPLAIN THAT.

>> RACHEL:  THANK YOU.

>> WENDY:  THANK YOU.
OKAY, SO I WAS TALKING ABOUT THE STANDING
REFERRALS.
SO YOU WOULD WANT TO CHECK WITH YOUR STATE
LAW AND SEE IF THAT'S SOMETHING YOU CAN DO.
AND EVEN IF IT ISN'T IN YOUR STATE LAW THAT YOUR
PRIMARY CARE PHYSICIANS NEED TO REFER YOU TO
SPECIALISTS AS NEEDED, THERE IS NOTHING THAT
SAYS THAT YOUR PCP, IF YOU EDUCATE THEM ON
WHAT YOUR SPECIAL NEEDS ARE, AND THAT IT'S A
WASTE OF TIME FOR YOU TO GO THROUGH THE PC F.
FOR THE DIFFERENT PROBLEMS YOU HAVE THAT THEY
DON'T HAVE THE EXPERTISE TO ADDRESS, THEN ON
YOUR OWN YOU MAY BE ABLE TO JUST GO AHEAD AND
GET THAT REFERRAL AND GET A STANDING REFERRAL
FOR THEM WITHOUT HAVING TO, SAY, WELL, IT SAYS IN
THE STAILT LAW.
BECAUSE I THINK THAT THAT'S IMPORTANT.

THERE ARE OTHER PROVISIONS AND THIS CAN BE
ESPECIALLY IMPORTANT IN LIGHT OF ONCE YOU
DEVELOP A GOOD RELATIONSHIP WITH A PHYSICIAN,
THAT CONTINUITY OF CARE IS REALLY IMPORTANT.
YOU WANT TO BE ABLE TO STAY WITH THAT PERSON.
THEY KNOW YOU, THEY UNDERSTAND YOUR HEALTH
CARE NEEDS.
SO IN SOME STATES THERE ARE PROVISIONS THAT SAY
THAT YOUR MANAGED CARE ORGANIZATION NEEDS TO
ASSURE THAT, FOR INSTANCE, IF SOMEONE NEW IS
ENROLLED IN THE PLAN AND THEY COME WITH
SOMEONE THEY'VE BEEN DEALING WITH AND HAS
EXPERTISE ON THEIR HEALTH THAT THERE AT LEAST
NEEDS TO BE A TRANSITION PERIOD WHERE THAT
PERSON IS GOING TO BE ABLE TO HAVE ACCESS TO
THAT SPECIALIST OR THAT DOCTOR FOR A CERTAIN
PERIOD OF TIME.
WHAT I HAVE SEEN IN THE STATE REGS IS THE PERIOD
FROM 60 TO 90 DAYS AND THERE IS OTHER
OPPORTUNITIES HERE, TOO, ONCE YOU'RE ENROLLED IN
ANOTHER PLAN IF YOU CAN GET THE DOCTOR YOU'VE
BEEN WORKING WITH TO JOIN THE PLAN, THERE IS
OTHER OPTIONS, BUT AT LEAST IN SOME STATES THERE
IS THAT BRIDGE THAT CAN BE SO IMPORTANT FOR
PEOPLE.
INDEED, ESPECIALLY SOMETIMES FOR PEOPLE WITH
BEHAVIORAL HEALTH CARE NEEDS AND THAT
RELATIONSHIP IS VITALLY IMPORTANT.
SO THIS CAN BE OF USE, BUT NEVER FORGET THAT I'M
TALKING ABOUT WHAT THE STATE LAW REQUIRES, BUT
INDIVIDUALLY THERE ARE THINGS YOU MIGHT BE
ABLE TO NEGOTIATE.
STUDY THE PLAN AND SEE IF THE PERSON CAN JOIN.

NEXT, I JUST WANT TO TALK ABOUT COMPLAINTS, AND
THIS IS REALLY, REALLY IMPORTANT, WHAT YOUR
STATE MIGHT HAVE IN PLACE.
DO THEY HAVE IN PLACE A NICE ROBUST COMPLAINT
PROCESS WHERE YOU'VE GONE THROUGH YOUR
INTERNAL GRIEVANCE PROCEDURES, YOU'RE NOT
GETTING THE CARE YOU NEED, YOU NEED TO GET
SOMEONE TO KIND OF LOOK AT WHAT IS GOING ON
AND MAKE A DECISION.

NOW, IN SOME STATES -- AND THERE IS A MYRIAD OF
DIFFERENT TYPES OF COMPLAINT PROCESSES, BUT
SOME OF THE ONES THAT I THINK LOOK REALLY GOOD
ARE STATES THAT HAVE AN INDEPENDENT REVIEW
PROCESS.
THIS MEANS IT'S NOT GOING TO BE SOMEONE IN THE
MCO ORGANIZATION, BUT SOMEONE OUTSIDE THAT
CAN REALLY LOOK AND SEE WHAT'S GOING ON.

NOW, IN SOME STATES, THERE IS JUST A LITTLE BIT OF
VERBIAGE WHERE THEY SAY EACH MCO NEEDS TO PUT
AN INDEPENDENT COMPLAINT PROCESS IN PLACE.
IN OTHER STATES, FOR INSTANCE CALIFORNIA AND
COLORADO, ACTUALLY IF YOU LOOK AT COLORADO,
THEY REALLY GO THROUGH IN GREAT DETAIL AND
TALK ABOUT WHAT THIS PROCESS NEEDS TO LOOK AT.
THEY TALK ABOUT TIME LINES WHICH CAN BE
IMPORTANT, THE QUALIFICATIONS OF THE REVIEWERS
ON THE INDEPENDENT REVIEW BOARD, SO THOSE
TYPES OF THINGS, FOR INSTANCE, IF YOU WERE
WORKING ON SOME KIND OF COMPLAINT PROCESSOR
REVIEW PROCESS, YOU WOULD WANT TO LOOK AT A
LOT OF THESE THINGS.
I DON'T THINK IT'S GOOD TO LEAVE IT UP TO AN MCO
TO DEVELOP THEIR OWN GRIEVANCE PROCESS.

SO THERE ARE SOME STATES THAT HAVE DONE
SOMETHING I THINK MORE MEANINGFUL TO ENSURE
THE INTEGRITY OF MANAGED CARE DECISIONS AND
COMPLAINTS.
SO, AGAIN, I WOULD LOOK, IF YOU ARE AT THAT U. R. L.,
TO SCAN DOWN AND LOOK AT COLORADO'S BECAUSE
THEY DO HAVE SOME TIME LINES IN THERE.
ALSO LOOK AT NEW YORK BECAUSE IN NEW YORK
THERE IS ALSO AN OPPORTUNITY FOR EXTERNAL
APPEALS.
AND THIS IS IMPORTANT, ONCE YOU GET OUT OF THE
MCO SYSTEM, AND YOU GET FOLKS ON THE OUTSIDE
TO LOOK AT THAT AND FOLKS WITH THE APPROPRIATE
QUALIFICATIONS, THEN I THINK YOU'RE GOING TO
HAVE A MUCH MORE MEANINGFUL ACCESS AND ALSO
BETTER DETERMINATION OF WHAT YOUR NEEDS ARE.

SO I WOULD ENCOURAGE YOU TO LOOK AT NEW YORK.

NEXT, I'M GOING TO LOOK AT SOMETHING, AND IN THE
OUTLINE I CALLED IT SELECTED BENEFIT MANDATES,
AND WHAT THESE ARE, THIS IS WHERE STATES HAVE
CARVED OUT CERTAIN TREATMENTS, CERTAIN
DEVICES, MEDICAL DEVICES, THINGS LIKE THAT WHERE
THEY SAY IT'S MANDATORY THAT IF PEOPLE NEED
THIS, THEY GET ACCESS TO IT.
AND I SUSPECT -- I DON'T KNOW WHAT THE ITERATION
OF SOME OF THESE ARE, BUT I SUSPECT THAT PEOPLE
HAVE ADVOCATED, IT'S BEEN AN IMPORTANT ISSUE OR
A PARTICULARLY VOCAL GROUP THAT HAVE GOTTEN
SOME OF THESE THINGS PASSED.
LET ME JUST REVIEW A FEW OF THESE.
SOME OF THESE HAVE TO DO WITH JUST GETTING THE
DRUGS YOU NEED.
WE ALL KNOW THAT WITH A LOT OF MANAGED CARE
ORGANIZATIONS, THAT IS A LIST OF DRUGS,
FORMULARIES, IF YOU WILL, AND THEY SAY THESE ARE
THE DRUGS THAT THE HMO WILL PAY FOR.
WELL, THERE ARE SOME LAWS IN PLACE THAT SAY, IF
THOSE AREN'T EFFECTIVE AND THOSE DON'T WORK,
THEN A PERSON NEEDS TO HAVE ACCESS TO OTHER
DRUGS THAT ARE GOING TO BE EFFECTIVE IN
TREATING THIS PERSON'S CONDITION.
SOMETIMES YOU HAVE TO GO THROUGH AND PROVE
YOU'VE GOT TO TAKE THEM AND YOU'VE GOT TO
PROVE THAT THEY'RE NOT GOING TO WORK.
ON 24ERS, FOR INSTANCE, IN ARIZONA, OTHER
SELECTED BENEFITS IN ARIZONA, HOME HEALTH CARE
SERVICES MUST BE A PART OF WHAT AN INSURANCE
PLAN OFFERS TO PEOPLE.
IT CAN BE PRESCRIBED -- IF THE PHYSICIAN PRESCRIBES
IT IN LIEU OF HOSPITAL SERVICES, THEN THAT NEEDS
TO BE PROVIDED.
IT'S ALSO INTERESTING -- I THINK I FOUND THIS IN
ABOUT FIVE OR SIX STATES WHERE THERE WAS A
BENEFIT CARVED OUT FOR PEOPLE WITH DIABETES,
AND GENERALLY SUPPLIED TO ALL HEALTH
INSURANCE POLICIES THAT REQUIRED COVERAGE OF
SELF MANAGEMENT TRAINING, MEDICALLY
NECESSARY EQUIPMENT, SUPPLIES AND ISER ADVICE
ES.
OTHER THINGS THAT WERE CARVED OUT, POST
MASTECTOMY BREAST RECONSTRUCTION, SPECIAL
DME FOOT WEAR THAT WAS CARVED OUT AND OTHER
THINGS LIKE THAT.
SO EACH STATE LIKE I SAID IF YOU REVIEW YOU MIGHT
FIND SOME INTERESTING THINGS THAT ARE REQUIRED
OF ALL HEALTH INSURANCE POLICIES THAT YOU MAY
NOT FIND ACTUALLY IN THE POLICY, BUT YOU WOULD
HAVE TO LOOK AT YOUR STATE LAW AND SEE THAT
THESE THINGS ARE REQUIRED.

THERE ARE ALSO AVAILABLE IN SOME STATES SOME
MANDATES THAT REQUIRE THE PROVISION OF BASIC
HEALTH CARE SERVICES, AND THIS JUST MEANS WHAT
THEY SET OUT IS THESE KINDS OF SERVICES ARE WHAT
MUST BE PROVIDED IN EVERY HEALTH CARE PLAN.
NOW, I DIDN'T FIND ANY STATE LAW THAT REALLY
PROVIDED SOME KIND OF COMPREHENSIVE LIST.
THEY GENERALLY DEALT WITH YOUR RIGHT TO HAVE
EMERGENCY CARE, NOT TO HAVE TO GO THROUGH THE
HMO, AND WHAT THEY USED IS, YOU KNOW, YOU GO
TO THE EMERGENCY ROOM AND USE A PRUDENT
LAYPERSON'S STANDARD WHICH MEANS THAT IF A
REASONABLE PERSON WOULD HAVE THOUGHT YOU
NEEDED TO GO TO THE EMERGENCY ROOM, THEN
THAT'S GOING TO BE FINE.
THE HMO IS NOT GOING TO HAVE ANY REASON TO
BACK OUT AND SAY WE'RE NOT GOING TO PAY FOR
THAT.

IN CALIFORNIA, WHEN WE TALK ABOUT BASIC HEALTH
CARE SERVICES, THEY INCLUDED IN THAT MEDICALLY
APPROPRIATE HOME HEALTH SERVICES.

AND MOVING ON TO WHAT HAPPENS WHEN COVERAGE
IS DENIED.
IN ONE STATE, THEY TALK ABOUT COVERAGE CAN'T BE
DENIED UNLESS THE ENROLLEE HAS BEEN EXAMINED
BY TWO PHYSICIANS SO PEOPLE CAN'T BE
AUTOMATICALLY DISENROLLED.
THEY HAVE A RIGHT TO GO TO OTHER PHYSICIANS AND
TO MAKE SURE THAT IT'S LEGITIMATE.

NOW, WITH MEDICAL NECESSITY, AND THIS IS A TOPIC
THAT COULD TAKE TWO OR THREE PRESENTATIONS.
IT IS REALLY COMPLEX, AND BY THAT I MEAN IT'S
WHAT IS MEDICALLY NECESSARY.
IS IT WHATEVER IT IS THAT CAN HELP YOU MAINTAIN
YOUR INDEPENDENCE, MAINTAIN OPTIMAL HEALTH,
WHAT DOES THAT MEAN?
ANYWAY, IN A COUPLE OF STATES WITH MEDICAL
NECESSITY DECISIONS, WHAT THEY SAID IS THAT THEY
SHOULD ONLY BE MADE BY A PROVIDER THAT REALLY
HAS RELEVANT EXPERTISE IN A CERTAIN SPECIALTY
AND AFTER CONSULTATION WITH A PERSON'S
PROVIDER.

NOW, ANOTHER IMPORTANT THING WITH HMO'S AND
AN IMPORTANT STATE LAW THAT IS IN PLACE IN A LOT
OF STATES -- I WOULD SAY MOST STATES ADDRESS
SOMETHING ABOUT DISCLOSURE.
THE MANAGED CARE ORGANIZATIONS, THERE ARE
SORT OF THESE RELATIONSHIPS THAT REALLY MAKE
ONE UNCOMFORTABLE ABOUT A DOCTOR'S ABILITY TO
MAKE A REASONED DECISION ABOUT YOUR HEALTH
CARE.
BEFORE MANAGED CARE ORGANIZATIONS, THE
DECISION WAS YOUR DOCTOR'S BASED ON WHAT HE
THOUGHT WAS MEDICALLY NECESSARY IN
CONSULTATION WITH YOU.
WHEN YOU INJECT MANAGED CARE INTO THIS
EQUATION, WHAT HAPPENS IS A DOCTOR'S DECISIONS
ARE OFTEN OVERSEEN BY SOMEONE IN THE MANAGED
CARE ORGANIZATION.
NOW, THIS CAN OCCUR IN A VARIETY OF WAYS
DEPENDING ON THE TYPE OF MANAGED CARE
ORGANIZATION THAT YOU'RE IN AND WHO THESE
DECISION-MAKERS ARE.
IT'S GOING TO DIFFER.
YOU KNOW, WHAT ARE THE LEVELS OF EXPERTISE OF
THESE PEOPLE?
SO THERE IS A LOT OF TROUBLESOME THINGS THAT
HAVE BEEN INJECTED INTO THIS EQUATION WHEN WE
TALK ABOUT MANAGED CARE ORGANIZATIONS.
AND ALSO THE PAYER OF MANAGED CARE MAKES
DECISIONS ABOUT WHAT THEY PAY FOR, THEN WE
HAVE CONCERNS IF THEY'RE REALLY LOOKING AT THE
BEST INTEREST OF THE PATIENT OR THEIR BOTTOM
LINE OF THEIR POCKETBOOK.
SO WITH THESE DISCLOSURE PROTECTIONS, WHAT A
LOT OF STATES ARE SAYING IS YOU CAN'T STIEFL
DOCTORS.
YOU CAN MAKE THEM TALK.
YOU CAN GO INTO A DOCTOR'S OFFICE AND YOU CAN
ASK THEM THINGS LIKE, YOU KNOW, I'M IN THIS HMO,
DOES THIS MEAN I'M SUBJECT TO THIS 15-MINUTE
RULE?
YOU CAN ONLY SEE ME 15 MINUTES?
ARE YOU CYCLING ME IN AND OUT?
WHAT IS THE FINANCIAL ARRANGEMENT THAT YOU
MIGHT HAVE WITH MY HMO?
I WANT TO KNOW BECAUSE I THINK IT'S IMPORTANT
THAT YOU UNDERSTAND THESE THINGS SO YOU CAN
UNDERSTAND THE DECISION THAT YOUR DOCTOR IS
GIVING YOU.

AND WHAT THESE STATE LAWS SAY IS THAT HMO'S
CANNOT GAG DOCTORS.
THEY CAN'T PENALIZE THEM FOR TALKING TO
PATIENTS AND YOU CAN GO IN AND ASK THEM AND
DOCTORS DO NEED TO TELL YOU.

AND DIFFERENT STATES HAVE BEEN MORE SPECIFIC IN
THEIR LANGUAGE WHEN THEY TALK ABOUT WHAT
NEEDS TO BE DISCLOSED.
FOR INSTANCE, IN ARIZONA, THEY TALK ABOUT THE
DOCTORS NEED TO DISCLOSE WHAT THEIR INCENTIVE
DISCLOSURE IS AND ANY PERSONALITIES THAT MAY BE
ASSESSED ON THEM IF THEY PROVIDE TOO MANY
SERVICES TO A PERSON AND IN CALIFORNIA, A
PHYSICIAN CAN'T BE PENALIZED FOR ADVOCATING FOR
MEDICALLY APPROPRIATE HEALTH CARE OR
DISCOURAGE A PHYSICIAN FROM COMMUNICATING
PATIENT INFORMATION.
SO THESE ARE ALL REALLY IMPORTANT THINGS.
SO I THINK IT'S IMPORTANT WHEN YOU GO INTO A
DOCTOR, REALLY, TO FIND OUT WHAT OTHER THINGS
IS A PHYSICIAN THINKING ABOUT WHEN THEY ARE
MAKING A DECISION ABOUT YOUR HEALTH CARE.
NEW YORK STATE ALSO HAS SOME LAWS ABOUT
DISCLOSURE AND THEY REQUIRE IT TO BE IN WRITING
TO EACH INSURED, SO YOU MIGHT WANT TO FIND OUT
WHAT'S GOING ON IN YOUR STATE AND SEE WHAT YOU
CAN REQUEST AND THEY MAY HAVE SOMETHING
ALREADY IN WRITING, BUT JUST KNOW -- AND I THINK
SIMPLY HAVING THAT KNOWLEDGE AND ASKING YOUR
PHYSICIAN THAT YOU'RE WELL AWARE OF SOME OF
THE THINGS GOING ON AND YOU WILL BE QUESTIONING
EVERY DECISION THEY MAKE.

SOME STATES ALSO -- AND THERE AREN'T A WHOLE
LOT, BUT THEY DO HAVE SOME CLAUSES THAT
ADDRESS NONDISCRIMINATION THAT SIMPLY SAY
THAT A PHYSICIAN OR A PLAN CAN'T BE PENALIZED OR
PEOPLE CAN'T BE DISENROLLED SIMPLY BECAUSE IT'S
TOO EXPENSIVE TO TREAT THEM BECAUSE OF THEIR
DISABILITY.
SO SOME STATES HAVE THOSE ONLINE.
THEY ARE NOT -- I COULDN'T SAY A MAJORITY OF THE
STATES HAVE THEM, AND I DIDN'T SEE ANY
PARTICULARLY POWERFUL LANGUAGE THAT
ADDRESSED THAT.

IN OTHER STATES, I ALSO FOUND THAT SOME STATES
ADDRESSED THE IMPORTANCE OF MENTAL HEALTH
PARITY.
THAT MEANS THAT GROUP HEALTH INSURANCE
POLICIES NEEDED TO PROVIDE THE SAME TYPE OF
COVERAGE THAT THEY WOULD PROVIDE FOR PEOPLE
WITH PHYSICAL DISABILITIES OR OTHER TYPES OF
HEALTH CARE.

AS A GENERAL RULE, YOU MIGHT WANT TO CHECK IN
YOUR STATE BECAUSE THIS CAN BE DEALT WITH IN
SEPARATE LEGISLATION AND AS YOU KNOW, IT'S ALSO
BEING ADDRESSED ON A FEDERAL LEVEL.

NOW, THERE ARE ALSO IN EACH STATE -- AND I WOULD
SAY PROBABLY IN ALL STATES, THERE ARE SOME
PROTECTIONS FOR HMO'S.
THERE ARE A FEW STATES, BEFORE I TALK ABOUT THE
PROTECTIONS FOR HMO'S, THERE ARE A FEW STATES
WHERE THEY DO TAKE AWAY AN HMO'S EXPOSURE TO
COMMON LAW CAUSES OF ACTION, AND WHAT THAT
MEANS IS IF YOU'RE IN ONE OF THOSE STATES, IF THE
INSURER DOES SOMETHING WRONG OR THE MCO DOES
SOMETHING WRONG THAT CAUSES SOME DAMAGE TO
AN INDIVIDUAL, THEN THEY CAN BE SUED USING
DIFFERENT COMMON LAW CAUSES OF ACTION.
AND THIS COULD BE A FRAUD CAUSE OF ACTION,
MAYBE SOMETHING IN TORT.
THOSE ARE PRETTY RARE.
UNFORTUNATELY, WHAT I HAVE FOUND IS THAT IN
MOST STATES THERE ARE PROTECTIONS FOR HMO'S
THAT SAY THAT THEY CAN'T BE HELD LIABLE FOR ANY
KIND OF DECISIONS THAT THEY MIGHT MAKE
REGARDING A PERSON'S HEALTH CARE.
THEY CAN'T BE HELD LIABLE FOR ANY KIND OF
DAMAGES OR OTHER THINGS.
SO THERE ARE PROTECTIONS OUT THERE YOU NEED TO
BE AWARE OF.
SO HMO'S CAN MAKE A LOT OF DECISIONS KNOWING
THAT THEY'RE GOING TO BE PROTECTED FROM SUIT
AND FROM DAMAGES.
SO THAT'S IMPORTANT TO UNDERSTAND THAT.

IN SOME STATES, AND AGAIN THIS WAS RELATIVELY
RARE, THERE ARE SOME MANDATES THAT SAY THAT
CONSUMERS NEED TO BE A PART OF A PANEL, IF YOU
WILL, OR BE SOMEHOW INVOLVED IN DEVELOPING
PLAN POLICIES.   AGAIN, THAT WAS PRETTY RARE.

IN NEW YORK, THERE WAS A PROVISION THAT WITHIN
ONE YEAR OF AN HMO RECEIVING A CERTIFICATE OF
AUTHORITY, THEN NO LESS THAN 20 PERCENT OF THE
MEMBERS OF THE GOVERNING AUTHORITY MUST BE
ENROLLEES OF THE HMO.
SO THERE ARE SOME MANDATES FOR CONSUMER
PARTICIPATION, ALTHOUGH THAT WAS VERY, VERY
RARE.

SOME OTHER THINGS THAT I CAME ACROSS THAT ARE
FAIRLY RARE AND EXIST ONLY IN A COUPLE OF
STATES, AND THAT HAS TO DO WITH SOME SPECIAL
NEEDS PLANS.
FOR INSTANCE, IN NEW YORK STATE THERE IS A
SPECIAL NEEDS PLAN FOR PEOPLE WITH HIV.
AND WHAT IT SAYS IS THAT PHYSICIANS, OTHER
HEALTH CARE PROVIDERS THAT ENROLL IN THIS NEED
TO DEMONSTRATE SPECIFIC LEVELS OF EXPERTISE IN
THE HIV AREA.
THEY NEED TO SHOW FINANCIAL RESPONSIBILITY.
THEY NEED TO SHOW THAT THEY'VE GOT A GOOD
REPUTATION OF PROVIDING CARE IN A TIMELY
MANNER, AND A NUMBER OF OTHER THINGS.
AND IT'S VERY SPECIFIC AS TO WHAT IS GOING TO BE
REQUIRED IF THEY WANT TO BECOME INVOLVED AND
PARTICIPATE IN THIS SPECIAL NEEDS PLAN.
AND IT ALSO OUTLINES, YOU KNOW, WHAT THE PLAN
RESPONSIBILITIES ARE, WHAT THE RESPONSIBILITIES
ARE FOR DOING OUTREACH AND ALL DIFFERENT KINDS
OF THINGS LIKE THAT.

NOW, THAT IS UNUSUAL.
I DID NOT FIND THAT IN MANY STATES.
SO, AGAIN, I ENCOURAGE YOU TO SCAN DOWN THAT
LIST OF ALL OF THE STATE LAWS.
SEE WHAT'S AVAILABLE IN YOUR STATE.
PLEASE KNOW THAT WE ARE IN THE PROCESS OF
UPDATING THAT LIST AND SEEING IF -- BECAUSE I
MEAN MOST STATES ARE IN A DYNAMIC STATE OF
CHANGE.
WE'RE HOPING THAT WITH PEOPLE BECOMING MORE
FRUSTRATED WITH HMO'S, THAT MORE EXCITING
THINGS ARE HAPPENING ON A STATE LEVEL.
SO I'M NOT SAYING THAT IF YOU LOOK AT THAT LIST
THAT WE HAVE THE LATEST AND GREATEST OF
EVERYTHING THAT'S THERE, BUT WE ARE IN THE
PROCESS OF LOOKING AND UPDATING THAT LIST.
AND IF YOU HAVE SPECIFIC QUESTIONS ON IT,
COMMENTS, IF THERE ARE THINGS GOING ON IN YOUR
STATE THAT YOU WANT US TO BECOME AWARE OF
AND WE CAN GIVE YOU A FORUM ON OUR WEBSITE,
PLEASE E-MAIL THOSE THINGS TO MY ATTENTION AT
THAT E-MAIL ADDRESS THAT LEX GAVE EARLIER.

NOW, IN MY NEXT TALK, WHICH IS COMING UP ON
DECEMBER 5TH, I'M GOING TO TALK ABOUT YOUR
PROTECTIONS THAT EXIST UNDER THE AMERICANS
WITH DISABILITIES ACT, UNDER SECTION 504 OF THE
REHABILITATION ACT, AND ALSO I'LL TOUCH ON A
LITTLE BIT ABOUT ERISA AND JUST OTHER LAWS THAT
REALLY IMPACT YOUR HEALTH INSURANCE.
LAWS THAT YOU MIGHT BE ABLE TO USE TO GET THE
HEALTH CARE THAT YOU NEED.
AND AGAIN, I REMIND YOU THERE IS NO BROAD
COMPREHENSIVE MANDATE, BUT THE ADA AND
SECTION 504 HAVE BEEN USED, I THINK, VERY
CREATIVELY TO CHALLENGE HEALTH CARE
PRACTICES.
SO WHAT I'LL BE DOING IS REVIEWING THE LITIGATION
WHICH SOMETIMES I HAVE NOT BEEN CRAZY ABOUT
SOME OF THE OUTCOMES.
WE'RE DEALING WITH A PRETTY CONSERVATIVE
JUDICIARY AND SINCE WE DON'T HAVE REALLY
STRONG LANGUAGE, FOR INSTANCE, IN THE ADA, THEN
WE MAY NOT BE GETTING SOME OF THE OUTCOMES
THAT WE NEED, BUT JUST KNOW THAT I THINK ON THE
SETTLEMENT FRONT WHEN PEOPLE ARE GOING
THROUGH AND CHALLENGING SOME OF THESE
PRACTICES THAT INFORMALLY WE'RE GETTING SOME
GOOD RESULTS.
THAT HMO'S ARE DOING WHAT THEY NEED TO DO
INSTEAD OF GOING TO LITIGATION.
SO I'LL BE REVIEWING THOSE DURING THE NEXT
SESSION.

AT THIS POINT, RACHEL, I'D BE GLAD TO TAKE PEOPLE'S
QUESTIONS IF YOU HAVE ANY QUESTIONS.

>> RACHEL:  OKAY, THANK YOU, WENDY.
YES, WE HAVE A NUMBER HAVE QUESTIONS.
ONE, I THINK YOU MIGHT HAVE JUST ANSWERED.
YOU MENTIONED A NONDISCRIMINATION CLAUSES
AND LAWS AND THE QUESTION IS DOESN'T THE ADA
PROVIDE FOR NONDISCRIMINATION AND THEN THEY
DID SAY IS THAT WHAT YOU'RE GOING TO BE TALKING
ABOUT IN THE FUTURE WEBCAST?

>> WENDY:  YES, I WILL BE TALKING ABOUT THAT IN A
FUTURE WEBCAST AND THE ADA DOES REQUIRE
NONDISCRIMINATION.
HOWEVER, AND I DON'T WANT TO GET INTO TOO MUCH
DETAIL TODAY BECAUSE IT IS A LITTLE BIT COMPLEX,
BUT THE PROBLEM WITH THE ADA IS GETTING IT TO
APPLY TO, FOR INSTANCE, INSURANCE -- THE
CONTENTS OF INSURANCE POLICIES.
IT'S REALLY UP FOR GRABS RIGHT NOW.
ONE CIRCUIT HAS SAID YES, ABOUT FOUR OTHER
CIRCUITS HAVE SAID NO, AND THERE IS WAYS TO GET
AT IT THROUGH TITLE I. OF THE ADA AND TITLE III AND
AT THAT TIME I'LL EXPLAIN WHERE WE ARE WITH THAT
AND HOW THE ADA CAN BE USED TO CHALLENGE
DISCRIMINATORY TREATMENT IN HEALTH CARE.

>> RACHEL:  YEAH, WE HAVE A NUMBER OF OTHER
QUESTIONS.
ONE IS I LEARNED A LOT THROUGH THIS
PRESENTATION, I DIDN'T KNOW THAT THERE WERE ALL
OF THESE LAWS AND PROTECTIONS AND IF I HADN'T
HEARD ABOUT THEM THROUGH THIS WEBCAST I MAY
NOT HAVE KNOWN THAT THEY EXISTED.
AND THE QUESTIONS THEN ARE, ARE THE MCO'S
REQUIRED TO INFORM US ABOUT THESE LAWS AND IF
PEOPLE DON'T HAVE ACCESS TO THE WEB, WHERE CAN
THEY GET COPIES OF THEIR STATE LAWS?

>> WENDY:  OKAY, THAT'S A GOOD QUESTION.
THE MCO'S, AND IT'S GOING TO DEPEND AND I MIGHT
HAVE YOU HOLD ONTO THAT QUESTION, RACHEL, SO I
MIGHT JUST POSE A MORE COMPLETE ANSWER LATER,
BUT MCO'S DO HAVE OBLIGATIONS AND DEPENDING IF
THEY'RE A MEDICAID MCO OR A PRIVATE ONE, TO LET
THEIR ENROLLEES KNOW WHAT THEIR RIGHTS MAY BE
AND HOW EFFECTIVE THAT OUTREACH HAS TO BE
ACTUALLY HAS BEEN ADDRESSED, SAY, THROUGH
MEDICAID THROUGH A LAWSUIT WHICH I'LL EE LOOSE
DATE MORE IN A FUTURE PRESENTATION, BUT, YES,
THEY DO HAVE SOME OBLIGATIONS TO DO SOME
OUTREACH AND, YOU KNOW, I KNOW IN A LOT OF
CASES I'VE HEARD FIRSTHAND THAT THAT HAS NOT
BEEN EFFECTIVE, BUT AS FAR AS WHETHER THEY ARE
LEGALLY MANDATED, THAT IS SOMETHING I'D LIKE TO
HOLD AND DO A LITTLE RESEARCH AND WILL GET
BACK TO YOU.

>> RACHEL:  OKAY, GREAT.
AND JUST TO CLARIFY FOR THE AUDIENCE, WENDY IS
REFERRING TO THAT FOR A PERIOD OF TWO WEEKS
FOLLOWING THIS WEBCAST, SHE, LIKE ALL THE
PRESENTERS DOING THE WEBCAST, WILL BE
AVAILABLE TO ANSWER ADDITIONAL QUESTIONS
THROUGH A DISCUSSION BOARD ON THE ILRU WEBSITE.
AND IF YOU COME BACK TO OUR WEBCAST PAGE
YOU'LL BE ABLE TO ACCESS THAT MESSAGE BOARD.

>> WENDY:  AND RACHEL, THERE WAS A SECOND PART
OF THAT QUESTION.
THEY WANTED TO KNOW HER THEY COULD OBTAIN
FULL COPIES OF THE REGULATIONS.
ON OUR WEBSITE, WE DO JUST HAVE BRIEF SUMMARIES
OF THOSE LAWS.
NOW, SOME STATES -- AND THERE ARE SOME LINKS
AND WE'RE GETTING READY TO PUT ANOTHER LIST UP
WHERE YOU'RE GOING TO GET MORE LINKS TO THE
ACTUAL LAW IN YOUR STATE.
NOW, SOME STATES MAY HAVE LIKE FULL TEXT OF
SOME OF THESE PROTECTIONS UP THERE, SOME MAY
NOT.
SO YOU WOULD BE ABLE TO EITHER GET THEM OFF THE
WEB, VISIT YOUR STATE SITE AND GO THROUGH AND
YOU'LL SEE THAT WE CITE THE ACTUAL PROVISION
AND SO YOU CAN LOOK THAT UP AND FIND OUT IF IT'S
THERE.
IF NOT, YOU COULD WRITE AND SEE IF YOU CAN JUST
OBTAIN IT THROUGH A PUBLIC INFORMATION OFFICE.
UNFORTUNATELY, SOMETIMES GETTING A HOLD OF
THE LEGAL INFORMATION THAT YOU NEED CAN BE A
DIFFICULT PROCESS, BUT THAT'S SOMETHING THAT
WE'LL INVESTIGATE MORE AND WE'LL PROVIDE YOU
ADDITIONAL TECHNICAL ASSISTANCE ON HOW TO DO
THAT.

>> RACHEL:  OKAY, GREAT.
ANOTHER QUESTION:  YOU MENTIONED THAT I'M
ENTITLED TO A HEARING WITH MEDICAID.
HOW DO I GO ABOUT GETTING A HEARING WITH THEM?

>> WENDY:  YES.
WHAT YOU NEED TO DO IS JUST -- IT'S MANDATORY IN
MEDICAID REGARDLESS OF HOW YOUR STATE
ADMINISTERS MEDICAID, AND IN FACT THERE WAS
SOME CONTROVERSY EARLY ON WHERE WHERE
MEDICAID WAS USING HMO'S AND HMO'S WERE
SAYING, NO, WE DON'T HAVE TO PROVIDE PEOPLE WITH
A MEDICAID FAIR HEARING, BUT INDEED THEY DO AND
YOU NEED TO REQUEST THAT AND YOU SHOULD BE
GIVEN THAT INFORMATION.
WHAT YOU WOULD NEED TO DO IS CONTACT -- AND
EACH STATE IT'S GOING TO BE YOUR DEPARTMENT OF
HEALTH AND HUMAN SERVICES THAT'SED GOING TO
ADMINISTER THAT HEARING AND SO YOU WOULD NEED
TO GET IN TOUCH WITH THEM AND FIND OUT WHAT
YOUR RIGHTS ARE AND EXACTLY WHAT THE
PROCESSES ARE FOR REQUESTING THAT.
AND JUST KNOW AS A POINT THAT OFTEN WHAT CAN
HAPPEN WHEN YOU GO THROUGH THE FAIR HEARING
PROCESS IS THAT A DECISION THAT'S BEEN MADE
WHEN YOU'VE BEEN DENIED, WHETHER IT'S DURABLE
MEDICAL EQUIPMENT OR WHATEVER YOU'VE BEEN
DENIED, THAT THAT CAN BE OVERTURNED AT THAT
LEVEL.


>> RACHEL:  OKAY, GREAT.
THE NEXT QUESTION IS WHEN YOU WERE TALKING
ABOUT THE PROTECTIONS THAT THE MANAGED CARE
ORGANIZATIONS HAVE, DID YOU SAY THAT HMO'S ARE
NOT LIABLE IF THEY MAKE A DECISION DENYING
PEOPLE CARE THAT THEY NEED?

>> WENDY:  YES.
UNFORTUNATELY, IN SOME STATES -- AND THESE
PROTECTIONS OF HMO'S VARY FROM STATE TO STATE,
BUT IN SOME STATES, YES, THEY EXPLICITLY DESCRIBE
AND STATE THAT HMO'S WILL NOT BE SUBJECT -- ARE
PROTECTED ESSENTIALLY -- FROM LAWSUITS BECAUSE
OF DECISIONS THAT ARE MADE.
SO THEY ARE REALLY PROTECTING THEM FROM TORT
LIABILITY AND THIS HAS BEEN A PRETTY HOT TOPIC IN
A LOT OF STATES AND SOME STATES AND ADVOCACY
GROUPS ON A STATE BY STATE BASIS HAVE
ATTEMPTED TO DO SOMETHING ABOUT THIS AND
THERE ARE SOME STATES WHERE I THINK THE
ADVOCATES HAVE BEEN SUCCESSFUL IN GETTING RID
OF THAT PROTECTION.

BUT THAT'S VERY RARE.

>> RACHEL:  OKAY, THERE IS A QUESTION HERE ABOUT
THE SCOPE OF YOUR RESEARCH.
DO YOU SEE ANY GENDER DIFFERENCES IN
DISCRIMINATION BY MANAGED CARE ORGANIZATIONS?
SPECIFICALLY, DO WOMEN WITH DISABILITIES FACE
MORE DIFFICULTIES GETTING PRIMARY AND
REPRODUCTIVE CARE THAN MEN WITH DISABILITIES?

>> WENDY:  THAT WASN'T A FOCUS OF OUR RESEARCH
SO I CAN'T SPEAK TO THAT FROM A SCIENTIFIC POINT
OF VIEW, BUT I KNOW THAT THERE ARE OTHER GROUPS
THAT HAVE STUDIED THAT AND, IN FACT, THE
WOMAN'S CENTER ON DISABILITY WHICH IS ACTUALLY
LOCATED IN HOUSTON, I BELIEVE, HAS DONE SOME
STUDIES ON THAT ISSUE AND THE LACK OF ACCESS TO
REPRODUCTIVE HEALTH CARE FOR WOMEN WITH
DISABILITIES.
SO I THINK, RACHEL, THAT'S SOMETHING WE NEED TO
MAKE A NOTE OF AND HOW WE CAN FIND AND SHARE
THAT RESEARCH WITH CALLERS.

>> RACHEL:  OKAY, WE HAD A COUPLE OF OTHER
QUESTIONS.
ONE IS I WANT TO GET A POWER CHAIR.
I'M IN A MEDICAID HMO.
CAN YOU PLEASE TELL ME HOW I SHOULD PROCEED?

>> WENDY:  OKAY, MEDICAID RECIPIENTS -- FIRST THEY
NEED TO GET PRIOR APPROVAL FROM THE STATE
DEPARTMENT OF HEALTH BEFORE ANY DME CAN BE
PURCHASED AND THIS CAN OFTEN BE A BATTLE
BECAUSE THE TENDENCY IS TO WANT TO PURCHASE
THE LEAST EXPENSIVE OPTION BUT DON'T REALLY
SUPPORT MAXIMUM INDEPENDENCE.
IN THE RESEARCH THAT WE DID IN THIS PROJECT, WE
CAME ACROSS A STORY WHERE A D. O. H. REP SAID
THEY THOUGHT BUYING A PERSON A MANUAL CHAIR
REALLY FOSTERED INTEGRATION, MEANING THAT THIS
WAY THE PERSON COULD GET OUT IN THE COMMUNITY
AND OTHER PEOPLE CAN HELP PUSH THEM AND ISN'T
THAT JUST A GRAY WAY TO GO.
SO THAT'S KIND OF THE MENTALITY THAT WE'RE
DEALING WITH WHICH IS JUST RIDICULOUS AND VERY
SAD.
SO WHAT YOU NEED TO DO IS REALLY ARM YOURSELF.
YOU WANT TO GATHER ALL KINDS OF
DOCUMENTATION, BUT FIRST WHAT YOU NEED TO DO
IS GET -- WORK WITH A VENDOR THAT HAS EXPERIENCE
WITH D. O. H., AND WHAT YOU WANT TO DO IS PROVE --
WHAT YOU HAVE TO PROVE WHEN YOU GET DME IS
THAT IT'S MEDICALLY NECESSARY.
AND YOU CAN PROVE THIS WHEN YOU CAN SHOW
THAT IT'S GOING TO PREVENT, DIAGNOSE OR CORRECT
OR CURE CONDITIONS IF ITS CAUSES A CUTE
SUFFERING, INTERFERES WITH THE CAPACITY FOR
NORMAL ACTIVITY OR THREATENS THE PERSON WITH
A SIGNIFICANT DISABILITY.
AND I THINK YOU WANT TO DO THINGS LIKE ARGUE
THAT IF YOU PUSH -- IF YOU PUSH -- IF YOU HAVE
SOMEONE PUSH A CHAIR INSTEAD OF LETTING THEM
USE A POWER KHAER, THAT THIS IS GOING TO CAUSE
DETERIORATION, AND IN THE LONG RUN IT'S GOING TO
CAUSE OR EX ASER BAIT THE PERSON'S DISABILITY.
SO STEPS, GET YOUR APPROVED DME VENDOR TO SEND
THE REQUEST TO THE D. O. H. OFFICE, MAKE SURE YOU
STAY INVOLVED AND WORK CLOSELY WITH THE
VENDOR, GET ALL KINDS OF SUPPORTING
DOCUMENTATION FROM HEALTH CARE
PROFESSIONALS, GET A MEDICAL DOCTOR ON BOARD,
GET AN OCCUPATIONAL THERAPIST, PROVIDE ALL THIS
INFORMATION TO THE VENDOR, AND YOU'RE ALSO
GOING TO WANT TO PROVIDE THEM THE LOTS OF
PROVE OF MEDICAL NECESSITY.
YOU WANT TO ALSO GET OTHER FOLKS ON BOARD.
YOU WANT TRUCKLOADS OF DOCUMENTATION FROM
NURSES, HOME HEALTH CARE AIDES, PSYCHOLOGISTS,
COUNSELORS, WHATEVER IS APPROPRIATE DEPENDING
ON WHAT YOU'RE TRYING TO GET.
ALSO LETTERS FROM OTHER SOURCES, EMPLOYERS,
CASE MANAGERS, FAMILY MEMBERS, ANYTHING YOU
CAN DO JUST TO DEMONSTRATE THAT THIS POWER
CHAIR IS REALLY GOING TO PROVIDE YOU WITH THE
INDEPENDENCE YOU NEED.
IT'S GOING TO HELP MAINTAIN YOUR HEALTH, AND
JUST REMEMBER IT'S MEDICALLY NECESSARY IF IT
PREVENTS OR CORRECTS A CONDITION THAT
INTERFERES WITH YOUR CAPACITY FOR NORMAL
LIVING.

NOW, IF THIS GETS DENIED, REMEMBER THAT D. O. H.
HAS 21 DAYS TO GRANT APPROVAL.
BUT IF THEY DON'T, IF THEY COME BACK WITH A
DENIAL, THEN WHAT YOU CAN DO IS ASK AT THAT
POINT ASK FOR A FAIR HEARING, AND THEN AGAIN
MAKE SURE YOU HANG ONTO ALL THE
DOCUMENTATION.
YOU'RE GOING TO HAVE TO PROVIDE ALL OF THOSE
THINGS TO YOUR HEARING OFFICER.


>> RACHEL:  OKAY, THAT WAS A GOOD THOROUGH
ANSWER.
LET'S SEE.
WE HAVE MAYBE TWO MORE QUESTIONS.
ONE HAS TO DO WITH GRIEVANCE COMPLAINTS
PROCESS AND THEY WANT TO KNOW WHAT ITEMS
SHOULD BE INCLUDED IN A GRIEVANCE COMPLAINT
PROCESS IN YOUR COMPLAINT?

>> WENDY:  OKAY, I THINK THERE ARE SOME REAL KEY
PRINCIPLES THAT YOU WANT TO KEEP IN MIND AND
WHAT YOU WANT TO MAKE SURE OF THAT IT'S AN
INDEPENDENT, EXTERNAL PROCESS.
YOU WANT TO MAKE SURE THAT THE QUALIFICATIONS
OF THE REVIEWERS ARE STELLAR, THAT THESE FOLKS
ARE WELL ACQUAINTED WITH DISABILITIES AND
UNDERSTAND THE NEEDS -- OR INTIMATELY FAMILIAR
WITH THE NEEDS OF PEOPLE WITH DISABILITIES.
YOU ALSO WANT TO MAKE SURE THAT THERE ARE
SOME REALLY STRICT TIME LINES IN PLACE AND THAT
THERE IS OPPORTUNITIES FOR SPEEDY HEARINGS,
BECAUSE A LOT OF THESE TIMES, PEOPLE REALLY
NEED TO GET A DECISION QUICKLY.
YOU ALSO WANT AS A GRIEVANCE COMPLAINT
PROCESS, IF YOU WILL, AS IT'S BEING DEVELOPED, YOU
WANT TO MAKE SURE THAT CONSUMERS HAVE INPUT
INTO THE PROCESS.
YOU REALLY WANT TO MAKE SURE SPECIFIC TIME
LINES ARE DELINEATED AND, AGAIN, INDEPENDENCE IS
VITALLY IMPORTANT.


>> RACHEL:  ANOTHER QUESTION WE HAVE IS HOW
CAN I FIND OUT ABOUT THE QUALIFICATIONS OF THE
PERSONNEL THAT ARE -- THEY SAID --
SECOND-GUESSING MY DOCTOR REGARDING THE
HEALTH CARE DECISIONS?

>> WENDY:  AND AGAIN, THERE IS NOTHING TO SAY
THAT YOU CAN'T ASK.
I THINK THAT YOU CAN FIND OUT THE PERSON'S NAME.
THERE IS NOTHING TO SAY THAT YOU CAN'T CALL
THEM AND SAY WHAT ARE YOUR QUALIFICATIONS?
AND INDEED, IF YOU ACTUALLY HAVE A PROTECTION
IN PLACE IN YOUR STATE THAT SAYS, YOU KNOW, THIS
PERSON NEEDS TO HAVE THAT QUALIFICATION, THEN
YOU WANT TO MAKE SURE THAT THEY HAVE THOSE.
SO, AGAIN, YOU CAN ASK.
YOU CAN ASK ANYTHING YOU WANT AND I THINK IT'S
IMPORTANT THAT YOU DO.
BECAUSE REMEMBER SOMETIMES THESE MAY BE
NURSES AND NOT DOCTORS OVERRULING THE
DECISION OF A DOCTOR THAT KNOWS YOU AND IS
INTIMATELY FAMILIAR WITH WHAT YOU NEED.


>> RACHEL:  OKAY, WE HAVE TWO OTHER QUESTIONS,
AND ONE OF THEM I JUST WANT TO LET THE PERSON
WHO E-MAILED IN KNOW THAT SOMEBODY E-MAILED
IN A VERY INTERESTING AND A RATHER LONG
QUESTION.
THEY ARE MAKING A SUGGESTION.
SORT OF AN AD VOE CASEY APPROACH AND ARE
ASKING FOR FEEDBACK ON IT.
AND I THINK WHAT WE'LL DO IS POST THAT UP ON THE
DISCUSSION BOARD AND THAT CAN BE THE INITIAL
QUESTION TO GET DISCUSSION GOING ON THE
DISCUSSION BOARD.
I WANT TO LET THAT E-MAILER KNOW THAT THAT WILL
GET ANSWERED BUT IT WILL BE A LENGTHY ANSWER
BUT IT DOES SORT OF TIE IN WITH WHAT IS OUR LAST
QUESTION HERE, WHICH IS PEOPLE WANT TO KNOW IF
THEY CAN GET INVOLVED IN ADVOCACY IN SOME WAY
AROUND PROMOTING GOOD STATE LAWS IN THESE
REGARDS AND HOW CAN THEY GET INVOLVED IN
ADVOCATING FOR THAT?

>> WENDY:  I WOULD SUSPECT AND HOPE THAT IN
EACH STATE THERE ARE GROUPS THAT ARE LOBBYING
AND ARE INVOLVED WITH THE STATE LEGISLATURE IN
GETTING MORE POWERFUL PROTECTIONS IN PLACE.
WHAT I WOULD DO IS CHECK FIRST WITH YOUR
CENTERS FOR INDEPENDENT LIVING, IF THEY HAVE
ANY INVOLVEMENT.
I WOULD ALSO FIND OUT, YOU KNOW, WHAT
DISABILITY ORGANIZATIONS -- WHETHER IT'S UNITED
CEREBRAL PALSY, ANY KIND OF DISABILITY
ORGANIZATION THAT ACTUALLY MIGHT HAVE LIKE A
LOBBYING ARM THAT IS INVOLVED IN SOME OF THESE
ISSUES.
I WOULD ALSO CHECK WITH YOUR PROTECTION
ADVOCACY AGENCIES.
THEY'RE GOING TO HAVE THEIR FINGERS ON THE PULSE
TO KNOW WHAT'S GOING ON AT THE STATE LEVEL AND
WHAT'S GOING ON IN THE LEGISLATURE, WHAT'S ON
THE HORIZON AND HOW YOU CAN GET INVOLVED AND I
REALLY ENCOURAGE PEOPLE TO.
I THINK THAT THERE REALLY IS A LOT OF
OPPORTUNITY TO REALLY MAKE SOME SIGNIFICANT
CHANGES AT THE STATE LEVEL.
THE FEDERAL GOVERNMENT THROUGH TWWIIA, WHICH
CHANGED UP WHAT MEDICAID CAN DO, REALLY
ALLOWS STATES TO BE CREATIVE AND TAKE BETTER
ADVANTAGE AND JUST DEVELOP SYSTEMS OF CARE
THAT ARE MUCH MORE RESPONSIVE TO THE NEEDS OF
PEOPLE WITH DISABILITIES.


>> RACHEL:  OKAY, GREAT.
AND IF PEOPLE HAVE ADDITIONAL QUESTIONS, AGAIN,
YOU CAN STILL E-MAIL THEM IN AND WE'LL POST THEM
UP ON THE DISCUSSION BOARD OR THERE WILL BE AN
ONGOING DISCUSSION BOARD AND WENDY WILL
RESPOND TO THINGS OVER THE NEXT FEW WEEKS
THERE.

THAT'S TEND OF THE QUESTIONS THAT WE RECEIVED
SO FAR.

>> WENDY:  I WANT TO THANK EVERYBODY FOR THEIR
TIME AND ATTENTION AND WISH EVERYBODY A
LOVELY AFTERNOON.

>> LAUREL:  OH, WENDY, I HAVE A COUPLE OF -- THIS IS
LAUREL AND I WANTED TO TAKE ADVANTAGE OF THIS
TIME.
I'VE GOT A COUPLE OF QUESTIONS I WANT TO POSE TO
YOU.
ONE IS I WONDER IF YOU COULD EXPLAIN HOW THE
INFORMATION FROM STATE TO STATE WAS GATHERED,
OR THESE LEGAL PROVISIONS.
WHAT WAS THE PROCESS FOR THAT?

>> WENDY:  THE PROCESS WAS WE ACTUALLY USED
LEGAL RESEARCH ENGINES TO SEARCH AND IDENTIFY
THOSE PROTECTIONS AND THEN JUST DID SORT OF A
FORMAL LEGAL ANALYSIS TO LOOK AT SORT OF THE
MYRIAD OF STATE LAWS THAT WERE OUT THERE.
IT WASN'T AN EASY PROCESS BECAUSE THEY'VE GOT
LOTS OF DIFFERENT THINGS.
THEY'RE NOT CALLED NONDISCRIMINATION
PROVISIONS.
SO WE JUST LOOKED AT WHAT'S OUT THERE AND I
CAN'T GUARANTEE THAT WE CAPTURED EVERYTHING,
BUT THAT'S ESSENTIALLY WHAT WE DID, AND LIKE I
SAID, IT'S A DYNAMIC AREA AND I SUSPECT AND HOPE
THAT SOME OF THESE THINGS ARE GROWING.

>> LAUREL:  ARE YOU AWARE OF OTHER
ORGANIZATIONSES OR CAN YOU PLACE THIS WORK
THAT YOU'RE DOING, ESPECIALLY THIS COLLECTING
DATA FROM STATE TO STATE, ARE THERE OTHER
ORGANIZATIONS DO THIS OR ARE YOU AWARE OF ANY
OTHER RESEARCH THAT'S BEEN CONDUCTED IN THIS
AREA?

>> WENDY:  I THINK THERE ARE DIFFERENT STATES --
SOME OF THEM HAVE SPECIFIC INTEREST IN, FOR
INSTANCE, THE BASS ROOM CENTER FOR MENTAL
HEALTH, THEY ARE LOOKING AT WHAT STATES ARE
DOING AND WHAT'S GOING ON AT THE FEDERAL LEVEL
WITH A SPECIFIC FOCUS ON MENTAL HEALTH ISSUES.
SO THEY'VE DONE SOME GREAT WORK.
ALSO -- AND I KNOW THE ACRONYM AND I CAN'T
REMEMBER THE FULL NAME, BUT IT'S IN HEALTH AND
THAT'S SOMETHING ELSE WE NEED TO POST THOSE U. R.
L.'S ON OUR WEBSITE BECAUSE THEY'VE DONE SOME
GOOD THINGS LOOKING AT WHAT'S GOING ON WITH
DIFFERENT STATE LAWS.
NOW, WITH KIND OF THE COMPREHENSIVE STUDY
THAT'S BEEN DONE, I HAVEN'T SEEN ANYTHING THAT
REFLECTS WHAT WE DO, BUT IT DOESN'T MEAN THAT
IT'S NOT OUT THERE.
SO I MEAN I WOULD FIRST VISIT OUR SITES AND LOOK
AT THOSE LAWS AND ALSO LOOK AROUND AND LOOK
AT NHELP, AND THE BASS LOM CENTER AND WE WILL
ALSO POST THOSE UP.
WE WANT TO GIVE PEOPLE THE FULL SPECTRUM OF
WHAT MIGHT BE AVAILABLE OUT THERE TO GIVE THEM
MORE TOOLSING.
BAZELON.

>> LAUREL:  LET ME ASK YOU A QUESTION.
YOU MENTIONED THAT I THINK IT WAS IN CALIFORNIA
THAT GIVES APPROVAL TO OR WILL ALLOW WHAT
THEY CALL MEDICALLY APPROPRIATE HOME HEALTH
CARE SERVICES.

>> WENDY:  YES.

>> LAUREL:  WHAT DOES THAT MEAN?
WHAT DOES THAT COVER?

>> WENDY:  I MEAN IT DOESN'T SAY ACTUALLY IN THE
LEGAL PROTECTION EXACTLY WHAT THAT COVERS.
I SUSPECT THAT IT'S GOING TO BE -- A PHYSICIAN IS
GOING TO HAVE TO APPROVE IT.
SO IT'S GOING TO BE WHATEVER IT IS THAT THE
PHYSICIAN APPROVES.
SO I THINK IT'S GOING TO BE AN ISSUE OF YOU GO TO A
PHYSICIAN THAT'S PRETTY SAVVY OR UNDERSTANDS
THAT THINGS CAN BE DONE AT HOME AND THEY DON'T
NEED TO BE DONE IN A HOSPITAL AND I SUSPECT THAT
THAT'S A LOT OF THINGS.
SO I WOULD THINK THAT'S PROBABLY MORE OF AN
INDIVIDUAL NEGOTIATION THING, BUT I DON'T KNOW.
LIKE I SAID, WHAT WOULD BE INTEREST TO GO SEE IS
REALLY TO -- AND I DON'T KNOW IF ANYONE LAST
DONE THIS, BUT REALLY JUST STUDY HOW THESE
PROTECTIONS ARE WORKING.
I MEAN WE'VE GOT THAT ONE QUESTION THAT PEOPLE
DIDN'T KNOW THEY EXIST, SO IF THEY'RE NOT BEING
EXERCISED, IF PEOPLE AREN'T AWARE OF THEM, THEN
MAYBE THEY ARE MEANINGLESS, BUT STATES HAVE
OTHER REQUIREMENTS, FOR INSTANCE, MEDICAID TO
KIND OF DO OUTREACH, AND LET PEOPLE KNOW
ABOUT THEIR RIGHTS, BUT I DON'T THINK WE HAVE
ANY REALLY GREAT DATA TO SEE HOW THESE ARE
WORKING.

>> LAUREL:  I KNOW IT'S PRETTY EARLY IN THE
PROCESS FOR ALL OF THE ACTIVITIES RELATED TO
HOMESTEAD, BUT PRESUMABLY THE INITIATIVES
PUSHING TOWARD ASSISTING PEOPLE WHO WANT TO
LEAVE NURSING HOMES OR OTHER INSTITUTIONAL
SETTINGS AND MOVE BACK INTO THE COMMUNITY
MUST HAVE A HUGE IMPACT ON THE MEDICAID
PROGRAMS AND THE HMO'S IN THAT REGARD.

>> WENDY:  I THINK THAT'S A REALLY, REALLY
IMPORTANT PIECE THAT PEOPLE NEED TO BE AWARE
OF AND IN MY NEXT PRESENTATION I'LL TALK A LITTLE
BIT ABOUT HOMESTEAD, NOT NECESSARILY WHAT'S
BEEN COVERED IN OTHER PRESENTATIONS, BUT HOW
THAT REALLY IMPORTANT STRONG INTEGRATION
MANDATE CAN BE USED IN OTHER ARENAS TO KEEP
PEOPLE FROM NURSING HOMES AND MAYBE GETTING
MEDICATION THAT THEY NEED AND GETTING THEM
DURABLE MEDICAL EQUIPMENT THAT THEY NEED
THAT WILL KEEP THEM FROM GOING INTO HOMES.
THAT'S A VERY IMPORTANT PIECE.

>> LAUREL:  GOOD.
WELL, THANK YOU.
I APPRECIATE THAT AND I'D LIKE TO, IF I MAY, DO A
WRAP UPRIGHT HERE.
A COUPLE OF THINGS:  I WANT TO REMIND YOU AGAIN
OF THE NEWS GROUP OR DISCUSSION GROUP THAT IS
BEING SET UP AND THAT WENDY HAS AGREED TO
MONITOR IT KIND OF CLOSELY FOR AT LEAST A COUPLE
OF WEEKS AND PERHAPS LONGER.
ANOTHER RESOURCE I'D LIKE TO BRING TO YOUR
ATTENTION IS THE DATABASE OF INFORMATION ON
RESEARCH THAT'S BEEN CONDUCTED AND PUBLISHED
IN THE RESEARCH INFORMATION FOR INDEPENDENT
LIVING DATABASE.
THAT CAN BE ACCESSED THROUGH WWW.GETRIIL.ORG
AND THERE YOU CAN ENTER KEY WORDS OR CERTAIN
WORDS IN THE SEARCH ENGINE AND OBTAIN
SUMMARIES OF RESEARCH PROJECTS AND ARTICLES
THAT HAVE BEEN PUBLISHED, REPORTS THAT HAVE
BEEN PUBLISHED ON DIFFERENT ASPECTS OF ALL
KINDS OF RESEARCH TOPICS, BUT IN PARTICULAR THIS
TOPIC OF MANAGED HEALTH CARE AND OTHER
HEALTH AND WELLNESS TYPE ISSUES.

ANOTHER RESOURCE IS ONE THAT WILL BE READY
EARLY NEXT YEAR.
WE ARE PREPARING A SPECIAL ISSUE OF SCI LIFE
WHICH WILL ADDRESS MULTIPLE ASPECTS OF
MANAGED HEALTH CARE AND IT'S DELIBERATELY TO
PRESENT TO STAKEHOLDERS WHO ARE NOT
RESEARCHERS INFORMATION ABOUT MANAGED
HEALTH CARE THAT'S BEING CONDUCTED -- RESEARCH
THAT'S BEING CONDUCTED NOW THROUGH VARIOUS
PROGRAMS IN THE COUNTRY.
WE'VE WORKED VERY, VERY CLOSELY WITH OUR
COLLEAGUES AT THE NATIONAL REHAB HOSPITAL
CENTER FOR DISABILITY AND HEALTH -- NO, IT'S
CENTER FOR HEALTH AND DISABILITY RESEARCH.
IN FACT, WENDY, I BELIEVE YOUR PROJECT WAS
FUNDED TO A GREAT EXTENT THROUGH THAT
RESEARCH AND TRAINING CENTER.

>> WENDY:  YES.

>> LAUREL:  AND THE WORK THEY ARE DOING IS
EXTRAORDINARY AND WE'RE IN OUR FIFTH YEAR OF A
FIVE-YEAR FUNDING CYCLE AND GREAT EMPHASIS IS
BEING PLACED ON DISSEMINATING FINDINGS FROM
THAT RESEARCH AND TRAINING CENTER.
SO YOU'LL BE SEEING INFORMATION, BUT ALSO THIS
SCI LIFE ISSUE WILL FEATURE ASPECTS OF MANAGED
HEALTH CARE FROM CERTAIN PREVENTATIVE CARE
THAT PEOPLE WITH DISABILITIES AS WELL AS OTHER
PEOPLE NEED TO BE AWARE OF, A CALL FOR
DISABILITY LITERACY, MUCH LIKE A CALL FOR
CULTURAL COMPETENCE.
THEY ARE ISSUES RELATED TO EMPLOYMENT AND THE
IMPACT THE ADA HAS HAD ON WORKPLACE BENEFITS.
ESPECIALLY HEALTH BENEFITS THROUGH RESEARCH
THAT'S BEEN CONDUCTED AT CORNELL UNIVERSITY.
SO THERE ARE A NUMBER OF ARTICLES THAT ARE
VERY PERTINENT TO THE SUBJECT TODAY, AND WE
WILL HAVE A CERTAIN NUMBER OF COMPLIMENTARY
COPIES TO DISTRIBUTE.
SO ANY OF YOU THAT WOULD LIKE TO HAVE A COPY,
TO SEND US YOUR NAME AND ADDRESS AND WE'LL BE
HAPPY TO HOLD IT AND THEN WHEN THE ISSUE IS
PUBLISHED PROBABLY EARLY IN THE NEW YEAR, WE
CAN DISSEMINATE THAT TO YOU.

FINALLY, I'D LIKE TO BRING YOUR ATTENTION TO THE
PRESENTATION, THE WEBCAST THAT WILL BE MADE
NEXT WEEK AND IT DOES DEAL WITH EMPLOYMENT
AND DISABILITY ISSUES.
AND WE INVITE YOU TO TUNE IN FOR THAT.
I'D ALSO LIKE TO INVITE YOU TO SUBMIT WHATEVER
RECOMMENDATIONS YOU CARE TO MAKE WITH
REGARD TO THIS PRESENTATION, NOT JUST THE
CONTENT, BUT WE WELCOME VERY MUCH ANY KIND
OF COMMENTS OR SUGGESTIONS, RECOMMENDATIONS
THAT YOU CARE TO MAKE REGARDING NAVIGATION,
HOW WE CAN MAKE IT MORE EFFECTIVE AND USER
FRIENDLY.
FOR THOSE OF YOU WHO HAVE HEARING IMPAIRMENT,
HOW WELL IS THE CAPTIONING GOING FOR YOU?
ARE THERE THINGS THAT WE CAN DO TO IMPROVE
THAT?

AND ANY OTHER KIND OF COMMENTS YOU CARE TO
MAKE ON INSTRUCTIONS OR SUBMITTING QUESTIONS,
WHATEVER, WE WELCOME IT VERY, VERY MUCH.

AND THEN FINALLY I'D LIKE TO AGAIN ACKNOWLEDGE
THE ROLE THAT NIDRR HAS PLAYED IN THIS PROJECT
WITH ITS INITIATIVE AND ITS COMMITMENT TO
DISSEMINATE TO THOSE OF US WHO ARE NOT
RESEARCHERS THE INFORMATION THAT'S BEING
CONDUCTED AND MILLIONS OF DOLLARS THAT'S BEING
SPENT ON DISABILITY RESEARCH IN A VARIETY OF
FIELDS.

IT'S THEIR INITIATIVE TO DISSEMINATE THAT TO THE
GENERAL PUBLIC AND THEY'RE DOING THAT THROUGH
SEVERAL PROJECTS AND ONE IS THEY HOLD
DEMONSTRATION PROJECTS RESPONSIBLE FOR
AGGRESSIVE INITIATIVES IN DISSEMINATING THIS
INFORMATION, BUT IN ADDITION, THEY'VE FUNDED THE
RESEARCH INFORMATION FOR INDEPENDENT LIVING
PROJECT THAT'S RIIL, AND IT'S EXPLICITLY TO
DISSEMINATE RESEARCH INFORMATION TO THE FIELD
THROUGH THESE WEBCASTS AND THE DATABASE AND
OTHER MECHANISMS.
SO WE APPRECIATE NIDRR SUPPORT AND THEIR
UNDERSTANDING THAT THE RESEARCH FINDINGS ARE
OF GREAT INTEREST TO THOSE OF US WHO WOULDN'T --
ARE NOT INTERESTED IN GOING TO RESEARCH
CONFERENCES.

I'D LIKE TO FINALLY ACKNOWLEDGE OUR TECHNICAL
PERSONNEL.
THIS WEBCAST WOULD NOT BE POSSIBLE WITHOUT THE
ROLE OF ROB DICKEHUTH AND MARIE BRYANT AND
THANK YOU BOTH AND TO OUR ILRU TEAM OF MARJ
GORDON AND SHARON FINNEY AND RACHEL KOSOY
AND DAWN HEINSOHN.
THANK YOU.
AND AS I SAY, PLEASE JOIN US AGAIN NEXT WEEK ON
ISSUES BASED ON RESEARCH THAT'S BEEN DONE IN
EMPLOYMENT AND DISABILITY ISSUES, AND WENDY,
THANK YOU AGAIN FOR A CHALLENGING
PRESENTATION.
A LOT OF US HAVE A LOT MORE WORK TO DO IN OUR
OWN STATES AND THANK YOU VERY MUCH FOR THAT.

>> WENDY:  WELCOME.

>> LAUREL:  MEANWHILE, WE WANTED TO THANK YOU
FOR JOINING US AND WE WISH YOU A GOOD
AFTERNOON.
THANK YOU.