their lives to this population. We   childran were% intended to live'  whi;jj;we g$dr?g A,
                                                                           v-F--. ,n insur-'
didn't have rigid agenda, 6r tin%  in an intensive %a& unit oi a.high-
frames                           ante-~%z&rpany,, end: show them
   -we had groupsin which i  risk nursery. High-risk nurseries
we talked about ventilator-depen-  have `other, @asons ,for`being.  cost sa&ngs ahd approach them

dent children - how ta get them  These children need a bet&home.  as c:oll&agues,thi jy-:are willing to
                                            listen and will.sr tmetimes revise
home, their problems, whetaur ex-  They need better afternative living  their policies inoidertocoverthese
periences have been, what we   solutions - if not their own home,
should look forward te in the fu-'  then a home-like set&$&&ome-   children;.
                         Third,, other .than the Crippled

tube. Consequently, we wanted to  thing e/se, "' ?::I
&ring these peopte together and   Third, oneof themajor&~&swe  Chitdren'snrograms,TitleXIX,and
                                           the Maternal Child Health Nook

&are experiences for ihiee main  face after medical stability is, "How  Grant, there are reallv no other
reasons.         .)_I
                  I=1,
                       
: .`Qne is best summa&&d      are we going to payforthesechif- : sources of funding, with the ex-
        by the `, dren to go home?`* We'voheardthe  ception `of grants and gifts. In II-
!ast few words that BettyWarten-  figures, and they are hard to be-   linois &d other states, we can
berg spoke at the Surgeon Genet- ,I  lieve. Do you really believe that we  save approximately $22,000 a
al's Workshop in Washington. ft   saved the stateof lllinois$5million   month by creating a little ambu-
made the hair on my neck stand up " in the last four years on these   latary intensive care unit in the
m, fhe back, and I shivered. Betty;  " children? These figures are over-  home. It looks like a home, but yet
#Fen she finished her. speech,  whelming. f .:>: :: ,`,,~
,+q$d, ,"I thank you for not pulling   .The first time I &as @`&viewed   it has equipment - a ventilator, a
                                   suctionmachine, andsometimesa

tee plug on Donnie."       far a local paper, they asked how   backup generator or ventilator.
j' <The second experience occurred   much the children's"case,:cast. I    We did not spend all of our time
attheendaftheseminarwhenthe  said some of these child&n's care  on funding at that conference. We
v&y imposing figure of the Sur-   costs $45,000 a month. .They put   also discussed the role of parents.
geon `General of the Urrited States   down $45,000 a year. I went back   The par&?s are critical-they are
stood before us and took-the gavel   to them and said, it's $45;000 a   really the case managers -they
and hit it hard and said;,r.f!`m sup month, not a year -a m&h. They  run the.show and make the opera-
posed to make decisi'ons; I de&are   said that's not possibte.  -__,      rion occur. We also talked about in-
that this conference~ise&ccess, `" it's not only possible, it% hap-  voiving the parents in training.
andwe'readjourned." Andweleft. pening.   _
            Therefore, wo addressed fund-    Another item we emphasized
Those two moments come to-                         was the differences that occur
gether to make our first point: We   ing issues at Brook Lodge. You  fromfamilytofamily, child tochild,
cannot give up on these children,   would be interested to know that   situation to situation. They're all
and we shall not give up on these   we have no iron-clad solutions.   different. We had to go to our tenth

I    
   ,d ,.                                                           .


                ,     ,, ,i ,, *e "i `?:"" _i                        8
child before we : had' a` du&c'&?~~~ the Department of Children and   bers. The Brook Lodae Cnnfnrentw
diagnosis. Cons&&n
no prototype ati&&`&

      ltfy, I& ha& 0 ' Family `Services put an ad in the                  - -~- --. ..-. -. .--
       i;?r~ge&$&~ `i, "paper concernihg a disabled &child,   devoted part of its time to the Ian-
We can'; -realty des&Be a `Len? `1                  giiage of the future. We looked at
                 `and they had 24 people respond.
tifator-dependent,chifd; therefor&                   what is going to happen to these
                Half of the respondents werenurs-
.we have to ha&+ exhatistive ~c& , ,, es, and two or three of them were  high-tech ventilator-dependent
                                     children in the future. We must not
Jailed care plans-f&thti+e, kids in  respiratory therapists. Out of that
:the home. How d&if&d? f tecen$y,`"` `.,"gioup ihte turned obt a veryi very  just think of the child alone, but of
                                the family, the community and of
sawonethatranalm&t4UOpage$
~~hildren'sHome&&h Networ&is 1.' fine candidate for $ medicat foster  `all the institutions that are in-
                 home. We are intheprocessnowof  votved. One of the speakers, Dr.
,com mitted to. `_ corisideriirg &very " drawing. up some. guidelines and;
T$ontingency wh&&e chi~dgx& ?' directions for medica# foster homes.  Kohrman, said that we must bring
borne. You have 70 kee$tha roa& :: .There are people who would like to,  _together people who are working
`bpen, make sure, the lights are@_                 with this kind of popultition to de-
                `take these children irito their homes. termine `their. educatt'btial needs.
and then, whiie daying~ that,, we:
have to keep saying'to ooriel&s `" "Sometimes it's: `n&f appropriate  What kind of planningdbthey have
                  `and sometimes they cannot leave.  for the future? Wh&t `kind of re !-
,~that every child; is,,?. home dli~  Therefore, we have to think about  gionafization do we need in order
charge candidate: Slbmetim&s we' .I, other forms 2 tike hospitaf schools,  ta put these childreit'in the least
have to come to thebitter gripF.!yf~: `:, upgrading of nursingfacilities,oth-   restrictive environtient? Can we
saying, `This chiw"is!"n& a candl-" * "`&r bediatric f&eiiities thar will gear" "irot s%y that the goai$$ {his popu-
date for home discharge,"and that  their way toward this population.  fation is to bring them t&the place
hurts us very much;,          `:(:.
                           (** (,
We are a government that: ii   In order `to serve this poputa-  that is best for them &:&row and
                  ation, you must have very con-   devefop?          ,; (: _,
ruled by regulatioris;therefore we  trolled standards and planned  Many of these thing&`$e have
are developing standards, guide-  guidelines. The whole system that  done before, so we need to coliab-
tines, and regulatiotis for getting  we are talking about is running  orate andfindoutfro&oneanother
these children home.         against the streams of medicine.  what is being done. The hours are
Home care is notalways enough   For years we've said, "Veryill chit-  long, the demands great;,&d the
-we need other alternative kinds  dren belong in hospitals:" Now
of places for these children to live  we're saying, "Maybe not."Maybe  payoffssometimesveryha+tqsee
                                     andveryhardtomeasure:butpedi-
such as medical foster homes. AI-  they needlo be in.the home; and  atric practice is exciting as&ethink
though it may sound impossible,  they are going horn? in large num-  about home care in the f$re. ,O

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