,i #aaf? ,,congress #b;d ,session ,h4 ,r4 #ijjb ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,decemb] #ag1 #bjbj ,ms4 ,de,gette 7= h]self & ,mr4 ,mc,caul7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,en]gy & ,comm]ce ,a ,,bill ,to am5d title ,,xix ( ! ,social ,security ,act to provide ,/ates an option to cov] a *ildr5's program ( all-inclusive coord9at$ c>e 7,chi,p,a,c,c7 "u ,m$icaid program4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,chi,p,a,c,c ,act ( #bjbj4 #b4 ,f9d+s ,congress f9ds t-- 7#a7 s]i\s illnesses & heal? conditions t are pot5tially life-?reat5+ place significant /ress on bo? ! *ild & family2 7#b7 palliative c>e relieves *ildr5's symptoms su* z pa91 fatigue1 anxiety1 nausea1 & sleep problems1 & may be provid$ at any age or /age ( s]i\s illness1 & has be5 %[n to enhance ! quality ( life = bo? ! *ild & family2 7#c7 "u ! exi/+ model "u ! ,m$icaid program "u title ,,xix ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acif et seq471 eligible *ildr5 diagnos$ ) pot5tially life-limit+ illnesses are limit$ to receiv+ hospice s]vices only aft] !y h be5 giv5 a prognosis ( six mon?s to live4 ,!re rema9 _m critical b>ri]s to end-(-life c>e "u ! curr5t heal? c>e sy/em1 includ+ reluctance ( m$ical pr(essionals & families to ackn[l$ge a limit$ life expectancy2 7#d7 su* model (f]s discrete s]vices1 :i* c be difficult to navigate1 :ile ! qualifications = cov]age "u ! ,m$icaid program c block access to critical c>e2 7#e7 ! ,*ildr5's ,program ( ,all-inclusive ,coord9at$ ,c>e 7ref]r$ to 9 ?is ,act z ,chi,p,a,c,c7 provides all-inclusive c>e = *ildr5 ) life-?reat5+ conditions & _! families f ! "t ( diagnosis &-- 7,a7 fills a gap 9 cov]age "u ! ,m$icaid program ( integrat$1 multi-discipl9>y s]vices t are reasonable & necess>y = ! palliation & managem5t ( s]i\sly ill *ildr52 7,b7 s]ves a population t includes *ildr5 :o are n yet hospice eligible2 & 7,c7 provides great] coord9ation ( palliative & curative s]vices = *ildr5 ?r\gh\t ! c\rse ( _! illness or condition1 :i* may beg9 at ! "t ( diagnosis2 7#f7 "s ,/ates h opt$ to provide s]vices t>get$ to ?is population ?r\gh waiv]s "u subsections 7b7 & 7c7 ( section #aiae ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acifn71 ea* ( :i* requires ! approval ( ! ,c5t]s = ,m$ic>e ,m$icaid ,s]vices ( ! initial waiv] application & any subsequ5t r5ewal ( su* waiv]2 7#g7 s9ce #bjje1 ! ,secret>y ( ,heal? & ,human ,s]vices has approv$ home & community-bas$ s]vice waiv]s "u section #aiae7;c7 ( su* ,act 7#db ,u4,s4,c4 #acifn7c77 to op]ate ,chi,p,a,c,c 9 five ,/ates2 7#h7 9 ,/ates op]at+ ,chi,p,a,c,c "u su* a waiv]-- 7,a7 ! respective ,/ate's ,m$icaid program a*iev$ significant co/ sav+s ?r\gh a r$uction 9 inpati5t c>e & an increase 9 less exp5sive outpati5t c>e2 7,b7 access to su* s]vices 9 su* ,/ates r$uc$ m co/ly utilizations ( o!r s]vices2 & 7,c7 s]vices provid$ ?r\gh ,chi,p,a,c,c are less co/ly to ! ,/ate's ,m$icaid program because ,chi,p,a,c,c facilitates *ildr5 receiv+ palliative c>e at home r ?an receiv+ su* s]vices 9 an inpati5t hospital sett+2 & 7#i7 all[+ ,/ates ! option to implem5t ,chi,p,a,c,c ?r\gh a ,/ate plan am5dm5t w\ld-- 7,a7 give ,/ates ! ability to make su* program a "p ( a ,/ate's ,m$icaid program :ile avoid+ ! l5g?y waiv] process2 & 7,b7 give ,/ates ! flexibility to e/abli% & design its program to fit ! ne$s ( ! respective ,/ate4 #c4 ,optional ,m$icaid cov]age ( *ildr5's program ( all-inclusive coord9at$ c>e 7a7 ,*ildr5's program ( all-,inclusive coord9at$ c>e ,title ,,xix ( ! ,social ,security ,act is am5d$ by ins]t+ aft] section #aidf 7#db ,u4,s4,c4 #acifw-#e7 ! foll[+ new section3 #aidg4 ,*ildr5's program ( all-inclusive coord9at$ c>e 7a7 ,/ate option 7#a7 ,9 g5]al ,beg9n+ on ,janu>y #a1 #bjba1 a ,/ate1 at its option z a ,/ate plan am5dm5t1 may elect to provide = m$ical assi/ance "u ?is title to ,chi,p,a,c,c-eligible individuals :o *oose to enroll 9 a *ildr5's program ( all-inclusive coord9at$ c>e4 ,9 ! case ( an individual :o *ooses to enroll 9 su* a program pursuant to su* an election-- 7,a7 ! individual %all receive ,chi,p,a,c,c b5efits 9 addition to o!r s]vices "u ! ,/ate plan2 & 7,b7 ! heal? c>e provid]s furni%+ s]vices "u su* program %all receive paym5t = provid+ su* s]vices 9 accordance ) ! t]ms ( ! ,/ate plan4 7#b7 ,num]ical & geographical limitations p]mitt$ ,a ,/ate may e/abli%-- 7,a7 a num]ical limit on ! numb] ( individuals :o may be enroll$ 9 ! ,/ate's ,chi,p,a,c,c2 or 7,b7 geographic limitations on ! s]vice areas = a ,chi,p,a,c,c4 7#c7 ,process = det]m9+ eligible individuals ,if a ,/ate elects to e/abli% a limitation "u p>agraph 7#b71 ! ,/ate %all e/abli% a process = det]m9+ crit]ia = :i* individuals :o may be enroll$ 9 ! ,/ate's ,chi,p,a,c,c4 7b7 ,chi,p,a,c,c & o!r t]ms def9$ ,9 ?is section3 7#a7 ,*ildr5's program ( all-inclusive coord9at$ c>e2 *ipacc ,! t]ms *ildr5's program ( all-inclusive coord9at$ c>e & ,chi,p,a,c,c mean a program ( coord9at$ c>e = ,chi,p,a,c,c-eligible *ildr5 t is e/abli%$ by a ,/ate "u ?is section & meets ! foll[+ requirem5ts3 7,a7 ,op]ation ,! ,/ate adm9i/]+ ag5cy may provide = ! op]ation ( ! program ?r\gh arrangem5ts betwe5 "o or m o!r entities t w s]ve z ,chi,p,a,c,c coord9ators 7z def9$ 9 p>agraph 7#c774 7,b7 ,compreh5sive b5efits 7i7 ,9 g5]al ,! program provides compreh5sive heal? c>e items & s]vices to ,chi,p,a,c,c-eligible individuals 7z def9$ 9 p>agraph 7#b77 9 accordance ) ?is section4 7ii7 ,scope & plan = s]vices ,su* items & s]vices %all-- 7,i7 include items & s]vices describ$ 9 subsection 7c77#a77;,a7 to ! ext5t su* items & s]vices are reasonable & necess>y1 z det]m9$ by ! ,/ate1 = ! palliation & managem5t ( ! ,,*ipacc-eligible individual's s]i\s illness or condition2 & 7,,ii7 be provid$ consi/5t ) a compreh5sive c>e plan develop$ by an int]discipl9>y heal? pr(essional team 7z def9$ 9 p>agraph 7#d774 7iii7 ,qualifications ( provid]s ,su* items & s]vices are provid$ ?r\gh heal? c>e provid]s t-- 7,i7 meet su* c]tification or o!r ,f$]al or ,/ate requirem5ts z may be necess>y to p>ticipate 9 ! program ( m$ical assi/ance "u ?is title or 9 ! program "u title ,,xviii2 & 7,,ii7 ma9ta9 records on ,chi,p,a,c,c-eligible individuals enroll$ 9 ! program & to :om ! provid] furni%es s]vices1 reflect+ bo? ! specific c>e & s]vices furni%$ by ! provid] & ! relation%ip ( ^? s]vices to ! compreh5sive plan ( c>e = t individual & to ! deliv]y ( o!r s]vices4 7#b7 ,chi,p,a,c,c-eligible individual ,! t]m ,chi,p,a,c,c-eligible individual means1 ) respect to a ,chi,p,a,c,c1 an individual-- 7,a7 :o1 at ! "t ( enrollm5t 9 ! ,chi,p,a,c,c1 is "u #ba ye>s ( age2 7,b7 :o resides 9 ! s]vice area ( a ,chi,p,a,c,c1 z def9$ by ! ,/ate adm9i/]+ ag5cy2 7,c7 :o is eligible = m$ical assi/ance "u ! ,/ate plan )\t reg>d to ?is section2 7,d7 :o suff]s f a s]i\s illness or heal? condition & = :om !re is a reasonable likelihood t ! individual's life w be ?reat5$ by su* illness or condition2 & 7,e7 ^: heal? /atus is expect$ to decl9e because ( su* illness or condition be=e atta9+ ! age ( #ba4 7#c7 ,chi,p,a,c,c coord9ator ,! t]m ,chi,p,a,c,c coord9ator means1 ) respect to a ,chi,p,a,c,c1 an entity 7:i* may be ! ,/ate adm9i/]+ ag5cy or ano!r entity "u an arrangem5t ) su* an ag5cy7 t1 ?r\gh ! assignm5t ( "o or m case manag]s-- 7,a7 directs1 sup]vises1 & assures ! coord9ation ( compreh5sive s]vices to ,chi,p,a,c,c-eligible individuals enroll$ 9 ! ,chi,p,a,c,c2 & 7,b7 assures ! direct & cont9u\s involvem5t ( an int]discipl9>y heal? pr(essional team 9 manag+ & coord9at+ ! provision ( c>e & s]vices )9 ! coord9ator's responsibility to ea* su* enroll$ individual4 7#d7 ,int]discipl9>y heal? pr(essional team ,! t]m int]discipl9>y heal? pr(essional team means1 ) respect to a ,chi,p,a,c,c1 a gr\p ( heal? pr(essionals t-- 7,a7 includes at lea/-- 7i7 "o physician 7z def9$ 9 section #ahfa7r772 7ii7 "o regi/]$ pr(essional nurse2 7iii7 "o social work]1 pa/oral c\nselor1 or o!r c\nselor2 & 7iv7 "o case manag] :o may be "o ( ! individuals describ$ 9 clauses 7i7 ?r\gh 7iii72 7,b7 develops a compreh5sive plan ( c>e = ,chi,p,a,c,c-eligible individuals enroll$ ) ! ,chi,p,a,c,c & furni%es1 or sup]vises ! provision ( c>e & s]vices describ$ 9 subsection 7c77#a7 to an individual enroll$ 9 ! ,chi,p,a,c,c 9 a mann] t takes into acc\nt ! be/ int]e/s ( su* individual & su* individual's family2 & 7,c7 ?r\gh direct action & communication ) heal? c>e provid]s furni%+ s]vices "u ! ,chi,p,a,c,c1 on behalf ( or "u ! direction or sup]vision (1 a ,/ate adm9i/]+ ag5cy or a ,chi,p,a,c,c coord9ator1 coord9ates ! c>e & s]vices furni%$ to su* enrollees4 7#e7 ,palliative s]vices ,! t]m palliative s]vices means pati5t & family-c5t]$ c>e t optimizes quality ( life = an individual ) a s]i\s illness or condition by-- 7,a7 anticipat+1 prev5t+1 & treat+ ! individual's suff]+ ?r\gh\t ! cont9uum ( illness2 7,b7 address+ ! physical1 intellectual1 emotional1 social & spiritual ne$s ( ! individual2 & 7,c7 facilitat+ ! individual's autonomy1 access to in=mation1 & *oice4 7#f7 ,/ate adm9i/]+ ag5cy ,! t]m ,/ate adm9i/]+ ag5cy means ! ,/ate ag5cy adm9i/]+ ! ,/ate plan "u ?is title 7or a waiv] ( su* plan74 7c7 ,scope ( b5efits 7#a7 ,9 g5]al ,"u a ,chi,p,a,c,c ( a ,/ate1 ! ,/ate adm9i/]+ ag5cy %all assure t-- 7,a7 an individual enroll$ 9 ! ,chi,p,a,c,c is cov]$ =1 at lea/-- 7i7 compreh5sive1 integrat$ palliative & curative s]vices2 7ii7 any long-t]m c>e s]vices & supports provid$ "u ! ,/ate plan "u ?is title 7or waiv] ( su* plan72 7iii7 c\nsel+ s]vices & expressive !rapy2 7iv7 respite c>e2 & 7v7 anticipatory b]eavem5t s]vices to ! imm$iate family memb]s ( ! ,chi,p,a,c,c-eligible individual2 & 7,b7 ! ,chi,p,a,c,c is op]at$1 & ! s]vices to enroll$ individuals are furni%$1 9 a mann] t is consi/5t ) ,/&>ds ( ,c>e & ,practice ,guidel9es develop$ by ,*ildr5's ,hospice ,int]national = a ,program ( ,all-,inclusive ,c>e = ,*ildr5 7z 9 effect z ( ! date ( ! enactm5t ( ?is section or su* lat] date z ! ,secret>y may specify7 or su* o!r /&>ds z ! ,secret>y may provide4 7#b7 ,con/ruction ,no?+ 9 ?is subsection %all be con/ru$ to preclude a ,chi,p,a,c,c-eligible individual's eligibility to receive o!r s]vices "u ! ,/ate plan 7or a waiv] ( su* plan71 includ+ e>ly & p]iodic scre5+1 diagno/ic1 & treatm5t s]vices "u section #aije7;a77#d77;,b74 7#c7 ,quality assurance2 pati5t safegu>ds 7,a7 ,9 g5]al ,) respect to a ,chi,p,a,c,c1 quality assurance & pati5t safegu>ds %all be e/abli%$ by ! ,/ate adm9i/]+ ag5cy or %all be consi/5t ) exi/+ ,/ate sy/ems4 7,b7 ,con/ruction ,no?+ 9 ?is subsection %all be con/ru$ z prev5t+ ! ,secret>y f impos+ requirem5ts to ensure ! heal? & safety ( individuals enroll$ 9 a ,chi,p,a,c,c "u ?is section t are 9 addition to ^? o!rwise provid$ "u ?is section4 7#d7 ,co/-%>+ waiv] ,a ,/ate adm9i/]+ ag5cy may1 9 ! case ( a ,chi,p,a,c,c-eligible individual enroll$ 9 ! ,/ate's ,chi,p,a,c,c1 waive d$uctibles1 copaym5ts1 co9surance1 or o!r co/-%>+ t w\ld o!rwise apply "u ! ,/ate plan "u ?is title4 7d7 ,eligibility det]m9ations 7#a7 ,9 g5]al ,9 det]m9+ :e!r an individual is a ,chi,p,a,c,c-eligible individual1 ! ,/ate adm9i/]+ ag5cy %all conduct an indep5d5t evaluation & assessm5t1 :i* %all include at lea/ ! foll[+3 7,a7 ,consultation ) appropriate treat+ & consult+ heal? & support pr(essionals c>+ = ! individual4 7,b7 ,an exam9ation ( ! individual's relevant hi/ory1 m$ical records1 & c>e & support ne$s1 guid$ by be/ practices & rese>* on effective /rategies t result 9 improv$ heal? & quality ( life outcomes4 7,c7 ,to ! ext5t appropriate1 consultation ) ! individual1 individual's family1 gu>dian1 or o!r responsible individual4 7#b7 ,recordkeep+2 appeals ,any entity mak+ ! eligibility det]m9ation "u p>agraph 7#a7 "u contract ) ! ,/ate adm9i/]+ ag5cy %all be subject to ! recordkeep+ & appeals processes requirem5ts specifi$ 9 section #aijb7;a77#c74 7e7 ,paym5ts to heal? c>e provid]s & ,chi,p,a,c,c coord9ators "u ,chi,p,a,c,c ,paym5ts to heal? c>e provid]s1 a ,chi,p,a,c,c coord9ator1 or an int]discipl9>y heal? pr(essional team furni%+ items & s]vices "u a ,chi,p,a,c,c %all be paid on a capitat$ or fee-=-s]vice basis 7or z o!rwise all[able "u ! ,/ate plan "u ?is title74 7f7 ,applicability ( requirem5ts ,) respect to c>ry+ out a ,chi,p,a,c,c "u ?is section1 ! foll[+ requirem5ts ( ?is title 7& regulations relat+ to su* requirem5ts7 %all n apply3 7#a7 ,section #aijb7;a77#a71 relat+ to any requirem5t t ,chi,p,a,c,cs or ,chi,p,a,c,c s]vices be provid$ 9 all areas ( a ,/ate4 7#b7 ,section #aijb7;a77#aj71 ins(> z su* section relates to comp>ability ( s]vices among diff]5t population gr\ps4 7#c7 ,sections #aijb7;a77#bc7 & #aiae7;b77#d71 relat+ to fre$om ( *oice ( provid]s4 7#d7 ,section #aijc7m77#b77;,a71 ins(> z x re/ricts a ,chi,p,a,c,c provid] f receiv+ prepaid capitation paym5ts4 7#e7 ,section #aije7o71 limit+ ! scope ( hospice c>e4 7#f7 ,su* o!r provisions ( ?is title t ! ,secret>y det]m9es are inapplicable4 4 7b7 ,application "u ,,*ip ,section #bajg7;e77#a7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #acig;gg7e77#a77 is am5d$ by add+ at ! end ! foll[+ new subp>agraph3 7,s7 ,section #aidg 7relat+ to ,m$icaid *ildr5's program ( all-inclusive coord9at$ c>e74 4 7c7 ,cont9u$ demon/ration project au?ority ,section #aidg ( ! ,social ,security ,act1 z add$ by subsection 7a71 %all n be con/ru$ z prev5t+ a ,/ate f develop+1 or ! ,secret>y ( ,heal? & ,human ,s]vices f approv+1 a project simil> to or relat$ to ,chi,p,a,c,cs 7z describ$ 9 su* section7 "u alt]native au?orities1 includ+ demon/ration project & waiv] au?orities "u title ,,xix ( su* ,act or o!r provisions ( su* ,act4