,,ii  #aai? ,,congress  #a/ ,session    
,s4 #gba  ,,9 ,,! ,,s5ate ,,( ,,!       
,,unit$ ,,/ates  ,febru>y #be1 #bjbe,mr4
 ,book] 7= himself & ,mr4 ,scott ( ,s\? 
,c>ol9a7 introduc$ ! foll[+ bill2 :i* 0 
read twice & ref]r$ to ! ,committee on  
,f9ance  ,a ,,bill  ,to am5d title ,,xix
 ( ! ,social ,security ,act to e/abli% a
 demon/ration project to improve        
outpati5t cl9ical c>e = individuals )   
sickle cell disease4  #a4 ,%ort title   
,?is ,act may be cit$ z ! ,sickle ,cell 
,disease ,compreh5sive ,c>e ,act4  #b4  
,enabl+ ,/ate ,m$icaid programs to      
provide c>e ?r\gh heal? homes to        
individuals ) sickle cell disease       
,section #aide ( ! ,social ,security    
,act 7#db ,u4,s4,c4 #acifw-#d7 is       
am5d$-- 7#a7 9 subsection 7a71 by ins]t+
 7&1 beg9n+ ,janu>y #a1 #bjbf1 to       
eligible individuals ) sickle cell      
disease 7z def9$ 9 subsection 7c77#e777 
aft] *ronic conditions2  7#b7 9         
subsection 7c7-- 7,a7 9 p>agraph 7#a71  
by ins]t+ & ea* eligible individual )   

sickle cell disease aft] *ronic         
conditions2 &  7,b7 by add+ at ! end !  
foll[+ new p>agraph3  7#e7 ,special rule
 relat+ to sickle cell disease heal?    
homes  7,a7 ,9 g5]al ,beg9n+ ,janu>y #a1
 #bjbf1 ! ,secret>y may approve a ,/ate 
plan am5dm5t "u ?is section t is design$
 to provide heal? home s]vices prim>ily 
to eligible individuals ) sickle cell   
disease 79 ?is section ref]r$ to z a    
sickle cell disease-focus$ ,/ate plan   
am5dm5t74  7,b7 ,requirem5t to provide  
d5tal & vision s]vices ,9 ! case ( a    
sickle cell disease-focus$ ,/ate plan   
am5dm5t approv$ by ! ,secret>y on or    
aft] ,janu>y #a1 #bjbf1 a ,/ate %all    
ensure ! provision ( d5tal & vision     
s]vices to eligible individuals ) sickle
 cell disease :o are enroll$ 9 su* heal?
 home4 ,su* requirem5t %all apply       
irrespective ( exi/+ requirem5ts relat$ 
to comp>ability or :e!r or n ! ,/ate    
provides d5tal or vision s]vices to o!r 
,m$icaid b5efici>ies4  7,c7 ,report     
requirem5ts  7i7 ,9 g5]al ,9 ! case ( a 

,/ate ) a sickle cell disease-focus$    
,/ate plan am5dm5t1 su* ,/ate %all1 at !
 end ( ! fir/ #h fiscal ye> qu>t]s t su*
 ,/ate plan am5dm5t is 9 effect1 submit 
to ! ,secret>y a report on ! foll[+1 )  
respect to eligible individuals ) sickle
 cell disease provid$ heal? home s]vices
 "u su* ,/ate plan am5dm5t3 7,i7 ,!     
quality ( heal? c>e provid$ to su*      
individuals1 ) a focus on outcomes      
relevant to ! recov]y ( ea* su*         
individual4  7,,ii7 ,! access ( su*     
individuals to heal? c>e4  7,,iii7 ,!   
total exp5ditures ( su* individuals =   
heal? c>e4  7ii7 ,applicable measures ,=
 purposes ( ! report requir$ "u ?is     
subp>agraph1 ! ,secret>y %all specify   
all applicable measures = det]m9+       
quality ( heal? c>e provid$ to eligible 
individuals ) sickle cell disease1      
access to heal? c>e by su* individuals1 
& exp5ditures on heal? c>e by su*       
individuals4  7,d7 ,be/ practices ,n    
lat] ?an ,june #cj1 #bjbf1 ! ,secret>y  
%all make publicly available on !       

website ( ! ,c5t]s = ,m$ic>e  ,m$icaid  
,s]vices be/ practices = design+ &      
implem5t+ a sickle cell disease-focus$  
,/ate plan am5dm5t1 bas$ on cl9ical     
practice guidel9es = sickle cell disease
 develop$ by m$ical specialty societies 
& 9 consultation ) sickle cell disease  
provid]s & pati5t advocacy              
organizations4  7,e7 ,def9itions ,=     
purposes ( ?is section3 7i7 ,eligible   
individual ) sickle cell disease ,! t]m 
eligible individual ) sickle cell       
disease means1 ) respect to a ,/ate1 an 
individual :o satisfies all ( ! foll[+3 
7,i7 ,! individual is eligible = m$ical 
assi/ance "u ! ,/ate plan or "u a waiv] 
( su* plan4  7,,ii7 ,! individual has   
sickle cell disease4  7,,iii7 ,!        
individual may or may n h previ\sly     
receiv$ heal? home s]vices "u any o!r   
,/ate plan am5dm5t approv$ = ! ,/ate "u 
?is section by ! ,secret>y4  7ii7       
,sickle cell disease ,! t]m sickle cell 
disease means an inh]it$ blood disord]  
affect+ r$ blood cells t occurs :5 an   

individual has inh]it$ a sickle cell g5e
 f ea* p>5t1 z id5tifi$ by a newborn    
scre5+ or o!r g5etic te/4  2 &  7#c7 9  
subsection 7h77#e71 by ins]t+ or a heal?
 home = eligible individuals ) sickle   
cell disease aft] *ronic conditions4