,i #aac? ,,congress #a/ ,session ,h4 ,r4 #ajae ,,9 ,,! ,,h\se ,,( ,,repres5tatives ,m>* #f1 #bjac ,mr4 ,pascrell 7= himself & ,mr4 ,k9z+] ( ,ill9ois7 introduc$ ! foll[+ bill2 :i* 0 ref]r$ to ! ,committee on ,ways & ,means ,a ,,bill ,to require ! ,commission] ( ,social ,security to revise ! m$ical & evaluation crit]ia = det]m9+ disability 9 a p]son diagnos$ ) ,hunt+ton's ,disease & to waive ! #bd-mon? wait+ p]iod = ,m$ic>e eligibility = individuals disabl$ by ,hunt+ton's ,disease4 #a4 ,%ort title ,?is ,act may be cit$ z ! ,hunt+ton's ,disease ,p>ity ,act ( #bjac4 #b4 ,f9d+s ,congress makes ! foll[+ f9d+s3 7#a7 ,hunt+ton's ,disease is a progressive deg5]ative neurological disease t causes total physical & m5tal det]ioration4 ,9 ! ,unit$ ,/ates1 approximately #cj1jjj individuals are affect$ by ,hunt+ton's ,disease1 along ) ano!r #bjj1jjj individuals :o are g5etically at risk4 ,!re is no effective treatm5t 9 t]ms ( halt+ or sl[+ ! progression ( ! disease4 7#b7 ,cl9ical indicators ( ,hunt+ton's ,disease include-- 7,a7 loss ( ability to control bodily movem5ts2 7,b7 loss ( ability to ?9k or act quickly1 inability to le>n new mat]ial1 & loss ( memory2 & 7,c7 behavioral or psy*ological problems1 includ+ p]sonality *anges1 irritability1 mood sw+s1 anxiety1 obsessive-compulsive behavior1 inability to conc5trate1 decreas$ motivation1 & sev]e depression4 7#c7 ,adult-onset ,hunt+ton's ,disease typically results 9 ! developm5t ( symptoms 9 individuals betwe5 #cj & #ej ye>s ( age4 ,late-onset ,hunt+ton's ,disease is *>act]iz$ by developm5t ( symptoms aft] #ej ye>s ( age & is usually associat$ ) a mild] c\rse ( ! disease4 ,juv5ile ,hunt+ton's ,disease affects individuals :o h yet to atta9 #ai ye>s ( age & progresses at a m rapid rate4 7#d7 ,because ( ! incapacitat+ nature ( ,hunt+ton's ,disease1 individuals liv+ ) ?is illness1 includ+ ^? 9 ! e>ly /ages ( ! disease1 are unable to reta9 employm5t4 ,z a result1 _m su* individuals rely solely on ,social ,security ,disability ,insurance4 7#e7 ,despite significant advances 9 m$ic9e & a great] und]/&+ ( ,hunt+ton's ,disease1 ! ,social ,security ,adm9i/ration has n compreh5sively revis$ its rules = ! m$ical evaluation ( neurological disabilities s9ce #aihe4 ,! designation ( ?is disease by ! ,social ,security ,adm9i/ration z ,hunt+ton's ,*orea is bo? outdat$ & m$ically inaccurate1 z ?is t]m fails to recognize ! behavioral & cognitive impact ( ,hunt+ton's ,disease1 :ile also provid+ an incomplete *>act]ization ( ! full spectrum ( ,hunt+ton's ,disease = purposes ( ,social ,security ,disability ,insurance & ! ,m$ic>e program4 7#f7 ,aft] qualify+ = ,social ,security ,disability ,insurance1 individuals ) ,hunt+ton's ,disease mu/ wait ano!r #bd mon?s be=e receiv+ b5efits "u ! ,m$ic>e program1 despite ! fact t su* individuals (t5 become incapacitat$ be=e rea*+ ! age-eligibility requirem5t "u ! ,m$ic>e program ( #fe ye>s ( age4 7#g7 ,9 #bjjj1 ! ,c5t]s = ,m$icaid ,m$ic>e ,s]vices waiv$ ! #bd-mon? wait+ p]iod requirem5t = p disabl$ by amyotrophic lat]al scl]osis 7,,als71 a deg5]ative neurological condition t is simil> to ,hunt+ton's ,disease4 7#h7 ,9 light ( ! outdat$ ,social ,security ,disability ,insurance guidel9es = ,hunt+ton's ,disease & ! significant cognitive1 behavioral1 & physical incapacitation fac$ by individuals ) ?is disease1 !re is an urg5t ne$ = a revision ( ! m$ical & evaluation crit]ia us$ by ! ,social ,security ,adm9i/ration 9 det]m9+ :e!r su* individuals are disabl$1 z well z removal ( ! #bd-mon? wait+ p]iod = cov]age "u ! ,m$ic>e program = su* individuals1 simil> to ! exi/+ exemption = individuals :o h be5 diagnos$ ) ,,als4 #c4 ,revision ( m$ical & evaluation crit]ia = evaluat+ disability caus$ by adult-onset & juv5ile ,hunt+ton's ,disease 7a7 ,9 g5]al ,= purposes ( det]m9ations ( cognitive1 behavioral1 & physical disability "u titles ,,ii & ,,xvi ( ! ,social ,security ,act1 ! ,commission] ( ,social ,security1 9 consultation ) ! ,national ,in/itute ( ,neurological ,disord]s & ,/roke1 ! ,national ,in/itutes ( ,heal?1 & o!r relevant organizations ) m$ical exp]tise relat+ to ,adult-,onset & ,juv5ile ,hunt+ton's ,disease1 %all1 n lat] ?an #ahj days aft] ! date ( ! enactm5t ( ?is ,act-- 7#a7 am5d section #aa4jj ( "p ,a ( ! ,li/+ ( ,impairm5ts 7relat+ to neurological impairm5ts ( adults7 by-- 7,a7 provid+ m$ical & evaluation crit]ia = ,hunt+ton's ,disease2 & 7,b7 /rik+ ,hunt+ton's ,*orea ea* place x appe>s2 7#b7 am5d section #ab4jj ( "p ,a ( ! ,li/+ ( ,impairm5ts 7relat+ to m5tal disord]s ( adults7 by provid+ m$ical & evaluation crit]ia = ,hunt+ton's ,disease2 7#c7 am5d section #aaa4jj ( "p ,b ( ! ,li/+ ( ,impairm5ts 7relat+ to neurological impairm5ts ( *ildr57 by provid+ m$ical & evaluation crit]ia = ,juv5ile ,hunt+ton's ,disease2 & 7#d7 am5d section #aab4jj ( "p ,b ( ! ,li/+ ( ,impairm5ts 7relat+ to m5tal disord]s ( *ildr57 by provid+ m$ical & evaluation crit]ia = ,juv5ile ,hunt+ton's ,disease4 7b7 ,li/+ ( ,impairm5ts ,= purposes ( ?is section1 ! t]m ,li/+ ( ,impairm5ts means app5dix #a to subp>t ,p ( "p #djd ( title #bj ( ! ,code ( ,f$]al ,regulations4 #d4 ,waiv] ( #bd-mon? wait+ p]iod = cov]age "u ,m$ic>e program = individuals diagnos$ ) ,hunt+ton's ,disease 7a7 ,9 ,g5]al ,section #bbf7;h7 ( ! ,social ,security ,act 7#db ,u4,s4,c4 #dbf7;h77 is am5d$1 9 ! matt] prec$+ p>agraph 7#a71 by ins]t+ or ,hunt+ton's ,disease 7,,hd7 aft] amyotrophic lat]al scl]osis 7,,als74 7b7 ,effective ,date ,! am5dm5t made by subsection 7a7 %all apply to b5efits "u title ,,xviii ( ! ,social ,security ,act ) respect to items & s]vices furni%$ 9 mon?s beg9n+ aft] ! date ( ! enactm5t ( ?is ,act4