,i  #aah? ,,congress  #b;d ,session  ,h4
 ,r4 #gdcb  ,,9 ,,! ,,h\se ,,(          
,,repres5tatives  ,febru>y #bc1         
#bjbd,mr4 ,burgess 7= himself & ,mr4    
,davis ( ,ill9ois7 introduc$ ! foll[+   
bill2 :i* 0 ref]r$ to ! ,committee on   
,en]gy & ,comm]ce  ,a ,,bill  ,to am5d  
title ,,xix ( ! ,social ,security ,act  
to enable ,/ate ,m$icaid programs to    
provide compreh5sive1 coord9at$ c>e     
?r\gh a heal? home to 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 #bjbe1 to       
eligible individuals ) sickle cell      
disease 7z describ$ "u 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 #bjbe1 ! ,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 ,report requirem5ts ,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 7i7 ,!      
quality ( heal? c>e provid$ to su*      
individuals1 ) a focus on outcomes      
relevant to ! recov]y ( ea* su*         

individual4  7ii7 ,! access ( su*       
individuals to heal? c>e4  7iii7 ,!     
total exp5ditures ( su* individuals =   
heal? c>e4  ,= purposes ( ?is           
subp>agraph1 ! ,secret>y %all specify   
all applicable measures = det]m9+       
quality1 access1 & exp5ditures4  7,c7   
,be/ practices ,n lat] ?an ,june #cj1   
#bjbe1 ! ,secret>y %all make publicly   
available on ! int]net 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 diseases develop$ by m$ical 
specialty societies & 9 consultation )  
sickle cell disease provid]s & pati5t   
advocacy organizations4  7,d7           
,def9itions ,= purposes ( ?is section3  
7i7 ,eligible individual ) sickle cell  
disease ,! t]m eligible individual )    
sickle cell disease means1 ) respect to 
a ,/ate1 an individual :o satisfies all 
( ! foll[+3 7,i7 ,! individual is       
eligible = m$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 7h7-- 7,a7 9 p>agraph 
7#d77;,a7-- 7i7 by /rik+ ! p]iod at !   
end & ins]t+ 2 &2  7ii7 by /rik+ means  
compreh5sive & ins]t+ means-- 7i7 )     
respect to eligible individuals ) *ronic
 conditions1 compreh5sive  2 &  7iii7 by
 add+ at ! end ! foll[+ new clause3     
7ii7 9 ! case ( a ,/ate t provides =    
d5tal s]vices & vision s]vices 7z def9$ 
by su* ,/ate71 ) respect to eligible    
individuals ) sickle cell disease1 !    
s]vices describ$ 9 clause 7i71 d5tal    
s]vices1 & vision s]vices4  2 &  7,b7 9 

p>agraph 7#e71 by ins]t+ or a heal? home
 = eligible individuals ) sickle cell   
disease aft] *ronic conditions4