3. ---------------------------------------------------------------------------
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SIal. 01 catiloml. - Ho"'I~ end Human Service. Agoney California OI!..........,.01 HeaIII1 Care Sen4ces
Gonelicaly Handicapped Po"""" Program (G/1PP)
GENETICALLY HANDICAPPED PERSONS PROGRAM (GHPP)
APPLICATION TO DETERMINE ELIGIBILITY
Refer to the Instructions on Page 3 and 4 When Riling In this Applcation
Please provide all the Information requested and return this form to the G~Ii!fLJlp'tp
PLEASE TYPE OR PRINT. DO NOT ABBREVIATE. ~..li-I . ..'
If you have any questions about completIng this form, MAlO 4 tUm
call the GHPP at 1 (916) 327-0470 or toll free at 1 (800) 639-0597.
Section A: Personallnfonnatlon
,
1. Name (Last) (First) (MI) 2. Other Name(s) Used 3. Social Security Number
(Optional)
Prezioso Joseph A
4. Address (Number, Street, Apartment Number) City County Zip Code
825 N 2ND ST SAN JOSE SANTA CLARA 95112
4(a). Mailing Address (If different from above) City County Zip Code
5. Day Telephone Number 16. Evening Telephone 7. Mother's First and Last (Maiden) Name 8. Primary Language
Number
(408) 991-4485 1(4081991-4485 Clara Guerriero English
9. Date of Birth (mm/ddlyyyy) 110. Place of Birth County: State: Country; 11. Gender
10/28/1961 Bronx NY USA [2] Male 0 Female
12. Vllhat is Your GHPP Eligible Condition?
Metabolic Disease: Phenvlketonuria (PKU)
13. RacelEthnicity
White
14. Name of Your Prim~ Care Physician (PCP) 15. Primary Care PhysiCian's Phone Number
Dr. Brian D. Goldman M.D. (925) 285-6760
14(a)Prlmary Care Physician's Address
3180 Crow Canyon Place Suite 230 San Ramon CA 94583
16. Power of Attorney/Conservator Information (If Applicable)
YOU MUST ATTACH SUPPORTING DOCUMENTATION
Name: Title:
Address: Telephone Number:
Section B: Health InsUrance Informatlon
17. Do You Have Medi-Cal? Yes U No W
a. If Yes, What is Your Beneficiary I.D. Card (BIC) Number?
18. Do You Have Medicare? YesU No ll.I a.lfYes, Vllhatis Your Medicare Number? ___________
b. Please Check All Medicare Programs in which You are Enrolled: Part A 0 Part B 0 Part cD Part DO
pag.1014DHCS ~"(2JD8)
;/
4.
5. 1
Joseph A Prezioso
From: Joseph A Prezioso [joseph.prezioso@live.com]
Sent: Sunday, May 27, 2012 5:49 PM
To: 'Secretary Sebelius (kathleen.sebelius@hhs.gov)'
Cc: Harry Byrd III; Jill Abramson
Subject: 1115 Demonstration Project Waivers
Attachments: GHPP STATE FAIR HEARING REQUEST.pdf
Importance: High
Sensitivity: Confidential
Follow Up Flag: Follow up
Due By: Friday, June 01, 2012 10:00 AM
Flag Status: Flagged
Categories: Civil Rights
Dear Secretary Sebelius,
First of all I want to compliment you for having an email address that all citizens can email their Secretary of the US
Department Health & Human Services. It’s a pretty important department to all citizens because well, we are humans,
and I know the Supreme Court said the corporation are “persons”, and I guess that’s OK, but they are not humans – even
the Supreme Court didn’t say that.
I have a meeting coming up with my Congresswoman Zoe Lofgren, MY CONGRESSWOMEN! I even spoke with her on the
phone and she couldn’t be any nicer. See I am in California’s 16th
Congressional District and her office is very close. It is
very exciting.
I have been having quite a difficult time getting my medical care that I think (but I am not sure) I am entitled to by law.
And I have been writing to everyone and anyone and I can’t seem to get any clear answers (actually pretty much nobody
answers). Now I know the laws are incredibly complex and I have done by best (we have a great law library in Santa
Clara County) to try and understand what the problem is. I want to be respectful of Congresswoman Lofgren’s time
because she has a lot of other constituents that need help as well so I am trying to verify and clarify as many things as
possible. I was hoping you could answer what is a very important question to me.
I have applied for a Medicaid program in the State of California; specifically CALIFORNIA MEDICAL ASSISTANCE
(MEDI-CAL) GENETICALLY HANDICAPPED PERSONS PROGRAM (GHPP).
The program as I understand it is definitely a Medicaid Program under Title XIX of the Social Security Act, and is part of
the California 1115 Demonstration Project Waiver.
The Waiver was approved by the US Department of Health and Human Services, Centers for Medicare & Medicare
Services on November 2, 2010. The signee was Donald M. Berwick, M.D.
Administrator. It also says the following individuals are key contacts:
Project Officer Steven Rubio
Centers for Medicare & Medicaid Services
Center for Medicaid, CHIP and Survey & Certification
7500 Security Boulevard
Mailstop S2-01-06
Baltimore, MD 21244-1850
Telephone: (410) 786-1782
Facsimile: (410) 786-8534
E-mail: stevcn.rubio@cms.hhs.gov
6. 2
Associate Regional Administrator Gloria Nagle
Division of Medicaid and Children's Health Operations
90 Seventh Street, Suite 5-300 (5W)
San Francisco, CA 94103 -6706
It also says that If you have questions regarding this approval, please contact:
Director Victoria A. Wachino
Family and Children's Health Programs Group
Center for Medicaid, CHIP and Survey & Certification
(410) 786-5647
As I understand some “Medicaid rules” are waived when a state files for a 1115 waiver.
My question is this: is it possible that certain rights, such as those enumerated under Title XIX of the Social Security Act,
compliance with and protections afforded under the Americans With Disabilities Act, and even such fundamental
things as “due process” and “equal protection” rights provided for in the US Constitution; can these be “waived” in a
State’s 1115 Waiver and then be approved by the US Department of Health and Human Services?
I sure hope the answer is no but I thought I should verify this before my meeting with Congresswoman Lofgren. I have
asked and written to many local, state, and federal government officials but no one answers. Actually hardly anyone
even knows that the CALIFORNIA MEDICAL ASSISTANCE (MEDI-CAL) GENETICALLY HANDICAPPED PERSONS PROGRAM
(GHPP) is a FEDERAL PROGRAM covered under Title XIX of the Social Security Act – it has been such for a very long
time. Since September 1, 2005, with Centers for Medicare & Medicaid Services approval and California Senate Bill
1100 legislation (Chapter 226, October, 2005), when both CCS and GHPP became Title XIX Medicaid waiver programs.
But the thing is, it would seem that no one in the programs was every told this – the current information on the
programs from the California Department of Health Care Services website makes no mention of this fact, nor such
basic things as telling applicants and participants that they have the right to file for a Medi-Cal State Fair Hearing,
receive proper Notice of Actions, etc.
And that may explain why I think (I am not certain) that the attached State Fair Hearing Request I filed may be the first in
the almost seven years since the program was “Federalized” – and perhaps that is why I have yet to receive a response
or a scheduled hearing date as required by law – and also why a whole bunch of folks seem pretty unhappy with me –
which is quite scary.
But if I am correct, and I am not sure that I am - don’t we have to tell these citizens’ this information and inform them
of their rights?
And I was thinking of sharing with Congresswoman Lofgren the idea that perhaps we should “tighten” up the “waiver”
approval process – I don’t think this is just a one-off case. Maybe it would be better in the future to require the Attorney
General as well as the Director of the Department of Health Care Services to sign off on the proposal from the states,
and approval should come from both the Department of Health and Human Services and also the United States
Department of Justice, Civil Rights Division. People tend to be more careful about details when they know that the
Attorney General and US DOJ are going to sign off on things.
Secretary Sebelius, the thing that is a little disappointing is that this program by its very definition is designed for citizens
who are “genetically handicapped” – or if you will, Americans with Disabilities – and it would seem that the entire
program has been in violation of the American with Disabilities Act since the day it was “federalized”.
7. 3
I am certain you know about the “Supremacy Clause” of our Constriction – states have their rights but Federal Law is
Supreme….it’s a pretty short clause but the Founder’s used the word SHALL three times – I think they were trying to
make the point very clear – SHALL means SHALL.
It would be very much appreciated to have your opinion on this matter before I meet with Congresswoman Lofgren;
because if I am incorrect then there is no point is wasting her valuable time.
Thank you.
Joseph A Prezioso
405 N Fourth St B18
San Jose CA 95112
408-883-5446
877-493-2031 fax
8.
9.
10. 1
Joseph A Prezioso
From: Novo, Don (CMS/CMCHO) [Don.Novo@cms.hhs.gov]
Sent: Thursday, June 21, 2012 11:03 AM
To: 'joseph.prezioso@live.com'
Cc: CMS ROSFOORA; 'Chief Counsel Press'; CMS ROSFOMCD; 'Deputy Director Clarkson';
'Attorney General Harris'; Sebelius, Kathleen (HHS/OS); 'Special Agent in Charge Douglas '
Subject: RE: Response to your letter to Secretary Sebelius
Good Morning Mr. Prezioso:
I want to acknowledge your email and questions. In an attempt to properly answer your questions I am going to need to
consult with other CMS colleagues. Please afford me the opportunity of a few days to review the information that you
submitted and respond accordingly to your questions.
Thank you,
Don Novo
Don Novo|Medicaid Program Branch Manager for the Division of Medicaid & Children's Health Operations |Region IX|
Centers for Medicare & Medicaid Services|90 Seventh Street, Suite 5-300 | San Francisco, CA 94103|: (415) 744-3674 | :
(303) 869-9083 | : don.novo@cms.hhs.gov
From: Joseph A Prezioso [mailto:joseph.prezioso@live.com]
Sent: Thursday, June 21, 2012 5:05 AM
To: Novo, Don (CMS/CMCHO)
Cc: CMS ROSFOORA; Chief Counsel Press; CMS ROSFOMCD; Deputy Director Clarkson; Attorney General Harris; Sebelius,
Kathleen (HHS/OS); Special Agent in Charge Douglas
Subject: RE: Response to your letter to Secretary Sebelius
Importance: High
Program Manager Novo,
Thank you kindly for your time today and I do appreciate the letter from Regional Administrator Nagle responding to my
letter to Secretary Sebelius. Please don’t misinterpret my questions as I only wish to try and understand the response –
and if I am wrong that is fine as one cannot learn anything when you are right.
I also ask your patience given:
- I do have some serious medical issues
- for whatever reason my various applications for public assistance (I prefer the more accurate legal definition of making
a claim for a “property right” under the law) have not gone smoothly
- I do have Asperger’s Syndrome which a symptom of is “black or white thinking”
In my defense I will also add that when it comes to the MEDICAID TITLE XIX OF THE SOCIAL SECURITY ACT:
“The Social Security Act and its regulations promulgated by the Department of Health and Human Services
("HHS") that implements it "present as complex a legislative mosaic as
could possibly be conceived by man." City of New York v. Richardson, 473 F.2d 923.926 (2d Cir. 1973);
accord Beverly Community Hospital Ass'n v. Belshe, 132 F.3d 1259,1266
11. 2
(9th Cir. 1997) (finding that "clarity is recognized as totally absent from the Medicare and Medicaid
statutes"), cert denied, 119 S. Ct. 334 (1998); Rehabilitation Ass'n of Va.,
Inc. v. Kozlowski, 42 F.3d 1444, 1450 (4th Cir. 1994) (characterizing Medicaid as "among the most
completely impenetrable texts within human experience" and "dense
reading of the most tortuous kind").”
So any difficulty in fully understanding MEDICAID TITLE XIX OF THE SOCIAL SECURITY ACT I do not take personally
– I am in good company!
1) I agree with Regional Administrator Nagle that California’s GHPP program is not authorized under TITLE XIX OF
THE SOCIAL SECURITY ACT
2) I agree with Regional Administrator Nagle that constitutional rights and ADA compliance (Supremacy Clause)
cannot be “waived” in a section 1115 demonstration waiver (I was actually shocked when I wrote to the HHS
OIG PIAR and the rhetorical nature of my question seemed to be missed and was referred to DHCS for an
answer)
3) I am uncertain about Regional Administrator Nagle’s statement that “GHPP is not a Title XIX program”?
Regional Administrator Nagle states explicitly in her letter that “the GHPP program is not a Title XIX program”.
But that is contradicted by:
1) DHCS 5-3-2007 (A) which states “ Effective September 1, 2005, with Centers for Medicare & Medicaid Services
approval ….CCS and GHPP became Title XIX Medicaid waiver programs”
2) 11678 Federal Register / Vol. 77, No. 38 / Monday, February 27, 2012 / Rules and Regulations: DEPARTMENT OF
HEALTH AND HUMAN SERVICES Centers for Medicare & Medicaid Services 42 CFR Part 431 [CMS–2325–F] RIN
0938–AQ46 Medicaid Program; Review and Approval Process for Section 1115 Demonstrations:
“This final rule will implement provisions of section 10201(i) of the Patient Protection and Affordable Care Act of 2010
that set forth transparency and public notice procedures for experimental, pilot, and demonstration projects approved
under section 1115 of the Social Security Act relating to Medicaid”
3) The CMS Waiver Authority (C) states:
All requirements of the Medicaid program expressed in law, regulation, and policy statement, not expressly waived
in this list, shall apply to the Demonstration from the approval date, through October 31, 2015, unless otherwise
specified.
4) The CMS Expenditure Authority states:
Under the authority of section 1115(a)(2) of the Social Security Act (the Act), expenditures made by California for the
items identified below (which explicitly lists the CCS & GHPP Programs) , which are not otherwise included as
expenditures under section 1903 of the Act shall, for the period of this Demonstration, be regarded as a expenditures
under the State’s Title XIX Plan
I believe that what Regional Administrator Nagle states explicitly in her letter “the GHPP program is not a Title XIX
program” is based on her first point that the GHPP is not authorized under TITLE XIX OF THE SOCIAL SECURITY ACT….but
that statement is true for every Medicaid program in every state in the country as all states authorize and establish
their own state plans – by definition there are no programs that are authorized and established under TITLE XIX OF THE
SOCIAL SECURITY ACT.
I believe the more relevant point is the eligibility for Federal Funds versus “State-only” funded programs.
The question is did something fundamentally change “ Effective September 1, 2005, with Centers for Medicare &
Medicaid Services approval” – I believe the answer is yes? Prior to that date it was a “State-only” funded program – so
California Law set the standard for appeals and hearing rights within the broader guidelines of Federal Law and US
Constitutional Rights.
12. 3
I believe prior to September 1, 2005 a citizen had to appeal via the California rules…but once Federal Funding started
then Title XIX requirements that cannot be waived take precedent. A citizen can choose to appeal – but the Federal
Courts have been quite clear one does not have to “exhaust all their remedies” despite what state regulations and
statues may say – one can go direct to a State Medi-Cal Fair Hearing. And what is disturbing is I believe that not a single
Notice of Action has been updated since September 1, 2005 telling anyone they have a right to a Medi-Cal Fair Hearing.
And that is what I found so troubling in the DHCS (B) report to the California Legislature indicating a perfect record of no
Medi-Cal Fair Hearings. No one knows they have Medi-Cal rights under Title XIX.
Title XIX of the Social Security Act is administered by the Centers for Medicare and Medicaid Services. Title XIX appears
in the United States Code as §§1396–1396v, subchapter XIX, chapter 7, Title 42. Regulations relating to Title XIX are
contained in chapter IV, Title 42, and subtitle A, Title 45, Code of Federal Regulations.” The question is do these laws
apply to the CCS/GHPP programns – I believe the answer is yes?
As the statue mandates per the DHCS Policy Letter G-01-1200 "GHPP shall authorize SCC services for all GHPP clients
who are required by program policy to receive care through the GHPP approved outpatient special care centers" &
"These services shall be authorized as GHPP benefits for all eligible GHPP clients" and finally “GHPP clients shall be
referred to the appropriate GHPP-approved SCC for diagnosis, evaluation, medical management and coordination of
care when the client has or is suspected of having a GHPP medically eligible condition requiring SCC evaluation and
follow-up.”
The policy letters and regulations are an extension of the statute per the law. Also reference CDHS CMS Information
Notice No.: 03-03 which says ”This information is being provided as a resource that can be used in conjunction with the
laws for these programs. As you know, the general purpose of having regulations is to implement, interpret or make
specific the law enforced or administered by it.”
California Supreme Court Rulings have validated that shall means shall. The California Supreme Court found a clear duty
was imposed by law upon the county defendants because a statute unequivocally required a particular action:
“[Government Code] section 66801, article VII, subdivision (a) provides that ‘[e]ach county in California shall pay the sum
allotted to it by the agency from any funds available therefor . . . .’ [Italics added by Younger.]” (People ex rel. Younger v.
County of El Dorado, supra, 5 Cal.3d at p. 491.) Peterson v. Superior Court (1995) 10 Cal.4th 1185, specifically ratifies the
application of the doctrine of negligence per se against for "failure . . . to comply with applicable statutes and ordinances
. . . ." Id., at 1204 note 10.
Medicaid agencies must make all rules and policies available to the public and provide copies to legal services offices.
(42 C.F.R. § 431.18.) No one outside of the DCHS has ever been informed that the GHPP and CCS programs were
“Federalized” under Title XIX of the Social Security Act effective September 1, 2005. No one at the Legal Aid services
offices had even heard of the program.
State Medicaid Programs must provide an opportunity for a fair hearing. (42 U.S.C. § 1396a(a)(3)) Medicaid applicants
and beneficiaries are entitled to a hearing whenever a service, or a request for a service, is reduced, denied, terminated
or not acted upon with reasonable promptness. (42 C.F.R. § 431.200 et seq.) Goldberg v. Kelley, 397 U.S. 254 (1970)
Public assistance beneficiaries have a constitutional due process right to a hearing prior to the termination of benefits.
This due process right includes adequate and timely notice, the opportunity to be heard by an impartial decision
maker and a decision based upon evidence adduced at the hearing. Medicaid regulations governing fair hearings, 42
C.F.R. § 431.200 et seq., provide detailed requirements regarding content and timing of notice, hearing procedures and
the content and timing of hearing decisions. The due process requirements of the Medicaid Act are enforceable under
42 U.S.C. § 1983. All categorically eligible beneficiaries must receive medical assistance that is no less than that provided
to other eligible individuals. 42 U.S.C. §1396a(a)(10)(B). Each service contained within the Medicaid state plan must be
"sufficient in amount, duration and scope to reasonably achieve its purpose. 42 C.F.R. § 440.230(b). The amount,
duration and scope provisions of the Medicaid Act and implementing regulations provide strong support to challenge
exclusions of treatment that fall within the scope of services covered. There is a long line of judicial decisions limiting
13. 4
states' discretion to exclude medically necessary treatment that falls within the scope of a covered service. State
Medicaid programs may not limit services based upon diagnosis, type of illness or medical condition. 42 C.F.R.
§440.230(c). The operation of state Medicaid programs must be based upon "reasonable standards." 42 U.S.C. §
1396a(a)(17). State Medicaid programs must include safeguards to ensure that services will be provided in a manner
consistent with simplicity of administration and the best interests of the recipients. 42 U.S.C. § 1396a(a)(19). A Notice of
Action is if the state plan takes an action, other than an approval, including a denial or a deferral, on a provider’s request
for any medical service. (Cal. Code Regs. tit. 22, § 51014.1(a)(1).) To be considered adequate, the notice must be in
writing and contain a statement of the intended action, as well as the reasons and specific legal support for the action
(42 C.F.R. §§ 431.206(b); 431.210, Cal. Code Regs. tit. 22, §§ 50179(c), 51014.1(c).) In addition, the notice must contain
an explanation of the individual’s hearing rights, rights to representation and to continued benefits (42 C.F.R. §§
431.206(b); 431.210, Cal. Code Regs. tit. 22, §§ 50179(c), 51014.1(c).)
So I agree with Regional Administrator Nagle that “the GHPP program is not a Title XIX program”. It is a California State
Medicaid Program authorized and established by the State of California. But CMS approved the Federal Funding – so
where is the “State Medicaid Programs must” part of the equation?
Why has my application languished since May 4 2010? Why can I not have a GHPP State Fair Hearing? Has there ever
been a GHPP State Fair Hearing? Why am I under attack literally and figuratively for just asking such a question? Why
was I dis-enrolled from my LIHP MCE for filing a grievance?
I do want to hear Chief Counsel Press’s opinion regarding this question – and I do want to go meet with him in my
State Capital – it is an incredible honor - and I take him at his word that he will get this properly resolved…if I am not
qualified then please just give me a proper NOA – if I am not entitled to a Medi-Cal State Fair Hearing then please just
explain why? And I do care very much about my State – and I am concerned that California, my state may be subject
to a class action lawsuit – and we have enough problems on our plate as it is.
But sir with respect this is not just an academic exercise for me….I am out on the street, terribly ill, getting no medical
care of any kind, and scared to even go to an ER as I have been threatened and assaulted at my Federally Qualified
Health Centers ….Where is MY ATTORNEY GENERAL KAMALA HARRIS? Why does she ignore me? Can the California
Department of Justice not assist me in any way?
I was told I had to leave the Emmanuel House because there were threats being made against me? My Case Manager
was fired? Why, for writing letters? Can the tired, poor and disposed not even be afforded first amendment rights?
Please, I need some urgent assistance….and if I must die out on the street then please at least explain this in a way
that I can understand….because at this moment I feel somewhat disappointed in
Secretary Sebelius’s response….if what I say is true why am I being punished? I did not go looking for this – if my
application would have been properly processed, if even one time a phone call was returned, I would not have out of
desperation resorted to endless hours in the law library trying to understand this….
And at this moment I still believe that 140,000 of my fellow citizens – children with serious medical conditions – are
having their rights violated as well….and I’m counting on you to do something about it because I am utterly
powerless…
I look forward to speaking with you later.
Best regards and with appreciation,
Joseph
From: Novo, Don (CMS/CMCHO) [mailto:Don.Novo@cms.hhs.gov]
Sent: Wednesday, June 20, 2012 4:24 PM
14. 5
To: 'joseph.prezioso@live.com'
Subject: Response to your letter to Secretary Sebelius
Good Afternoon Mr. Prezioso:
Attached is a copy of the letter responding to your questions presented to Secretary Sebelius. I will touch base with you
by telephone tomorrow at 12:30 as we discussed. Please let me know if you have any questions or require clarification.
Thank you,
Don Novo
Don Novo|Medicaid Program Branch Manager for the Division of Medicaid & Children's Health Operations |Region IX|
Centers for Medicare & Medicaid Services|90 Seventh Street, Suite 5-300 | San Francisco, CA 94103|: (415) 744-3674 | :
(303) 869-9083 | : don.novo@cms.hhs.gov
15. DOING THE MOST GOOD
With your contributions of money, time and resources
Bus: 408-282-1175 harry.byrdIII@usw.salvationarmy.org www.salvationarmysiliconvalley.org
Fax: 408-286-8784
Harry Byrd III, Case Manager Emmanuel House
405 N Fourth Street
San Jose, CA 95112
U.S. House of Representatives
California's 16th Congressional District
San Jose Office
635 N. First Street, Suite B
San Jose CA 95112
Congresswomen Zoe Lofgren
Subject: Request to schedule a meeting
Ref: Constituent assistance with issues involving Federal Medicaid Healthcare Programs
5/21/2012
Dear Congresswomen Lofgren,
I am the new Cass Manager at the Emmanuel House, The Salvation Army Silicon Valley and consider it a
privileged duty and a blessing to serve some of the neediest citizens who reside in California's 16th Congressional
District. The district whose interests you so honorably represent in the Congress of the United States of America.
I want to compliment you on a consistent record of staunch support for Health Care access and assistance for all
Americans, as I believe it is not possible for one to pursue happiness when they are deprived of access to basic and
needed medical care. I applaud you stance in signing, along with fellow members of the California Democratic
Congressional Delegation, the July 8, 2011 letter to President Obama asking him to reject cuts to Medicaid that
were being proposed by some members of Congress. Please continue to raise your voice for those who can speak
for themselves, but seem never to be heard.
I am writing to request a meeting on behalf on one of your constituents, Joseph Prezioso who resides with us at
the Emmanuel House. Joseph is not a transient; he is a citizen and proper resident of California's 16th
Congressional District where he is a confirmed registered voter. Joseph has several rare and complex medical
conditions and it would appear he is qualified for several federally funded programs, but perhaps due to the
complexities of California’s Section 1115 waiver, approved by the US Health and Human Resource Agency, he has
“fallen through the cracks” of the safety net and is getting no medical assistance of any kind. He has even been
turned away at his Federally Qualified Health Center (FQHC), under the jurisdiction of the The Bureau of Primary
Health Care, part of the Health Resources and Services Administration (HRSA). The health programs include
those funded under the Health Center Consolidation Act (Section 330 of the Public Health Service Act).
Joseph only asks for the medical assistance he is entitled to, or a reasonable and proper explanation of why he has
continually been denied. To date he has received neither.
16. Harry Byrd III, Case Manager Emmanuel House
2
The required information is as follows:
JOSEPH A PREZIOSO
405 N 4TH ST B18
SAN JOSE CA 95112
408-883-5446
joseph.prezioso@att.net
Date and time would be your earliest convenience at your San Jose Office – we are less than a mile away. I would
be attending along with Joseph, and possibly, schedule permitting, a good friend of Joseph, Dr. Rodrigo Alonso,
Ph.D.
I trust you will try to do what is possible that you can do for Joseph, but we do understand even a distinguished
Congresswomen cannot resolve all issues. But Congresswomen Lofgren, I promise you the cause is a good one and
just by the act of granting Joseph the privilege of a meeting you will be doing something to encourage not just
Joseph, but many other citizens in need as well. See we do not often receive much mail at the Emmanuel House
addressed from the Registrar of Voters, or the Attorney General of the State of California, or the Secretary of the
U.S. Department of Health and Human Services Agency. Some of our other residents have taken notice, and they
are inspired by Joseph’s willingness to fight for his rights. Who knows, perhaps we might start getting mail on a
more regular basis from the Registrar of Voters.
Joseph wanted me to share with you that he is the proud son of an immigrant, born and raised in the Bronx, New
York, and his father honorably served a tour of duty aboard a destroyer in the United States Navy. Though he is
tired, poor and dispossessed he has never been prouder to be a Citizen of the United States of America. He truly
understands and appreciates that blessing, that he does in fact have inalienable rights and has faith that his
government will protect him. For that is the very reason that motivated his Mother to come to our shore, and
purpose that his Father was willing to serve his tour.
Congresswomen Lofgren, thank you for your consideration.
Sincerely,
Harry Byrd III
Case Manager Emmanuel House
CC: Joseph A Prezioso
17. State of California Health and Human Services Agency Department of Social Services
STATE HEARING REQUEST
State Hearings Division
Joseph A Prezioso
405 N Fourth St
San Jose CA 95112
408-883-5446
877-493-2031fax
joseph.prezioso@att.net
V.
Department of Health Care Services,
Systems of Care Division
Statewide Programs Section
P.O. Box 997413, MS 8102
Sacramento, CA 95899-7413
District Office: 720 Empey Way
San Jose, CA 95126
Case Manager: Carol Hazell, RN, PHN (GHPP)
Case Name: Joseph A. Prezioso
Case #s: X5445 & 4913810
CIN #: 95486255E4
BIC ID No: 95486255E41325
SAR #: 99033765400
County of Residence: Santa Clara
Birth Date: October 28 1961
STATE HEARING REQUEST:
I DO NOT AGREE WITH STATE ACTION AND
INACTION ABOUT MY APPLICATION FOR
CALIFORNIA MEDICAL ASSISTANCE (MEDI-CAL)
GENETICALLY HANDICAPPED PERSONS PROGRAM
(GHPP), CHANGES TO MY CALIFORNIA MEDICAL
ASSISTANCE (MEDI-CAL) GENETICALLY
HANDICAPPED PERSONS PROGRAM (GHPP)
ELLIGIBILITY STATUS, AND DENIAL OF
AUTHORIZED HEALTH BENEFITS.
Hearing Request Type: IN PERSON
Request Submission Date: Mar, 31 2012
Presiding: Chief Administrative Law Judge
Manuel A. Romero
Address: P.O. Box 944243
Mail Station 9-17-37
Sacramento, California 94244
18. State of California Health and Human Services Agency Department of Social Services
STATE HEARING REQUEST
Prezioso V. DHCS, Case #s: X4544 & 4913810, State Hearings Division, Health and Human Service Agency
1
INTRODUCTION
I respectfully request a fair hearing to be scheduled within 30 days, reinstatement of my
program eligibility, and be allowed to have services and medical assistance provided while a
decision is pending.
ACTIONS I WILL CHALLENGE AT THE FAIR HEARING
• Refusal and Delay in processing Medi-Cal application
• Determination that I am no longer eligible for Medi-Cal
• Inadequate notice
• An unreasonable delay in receiving services
• Reduction in services
• Termination and denial of a Medi-Cal covered services
CONCLUSION
I respectfully request and pray for relief that this Honorable Administrative Court of Law
expeditiously as is possible and as the Court sees as is reasonable grant my hearing, reinstate my
Medical eligibility, and permit me to be allowed to have needed and mandated support services
and medical assistance while a decision is pending.
DATED: March 31, 2012
Respectfully submitted,
JOSEPH A. PREZIOSO
Citizen, United States of America
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19. Holden-Moscone-Garamendi Genetically Handicapped Person's Program.
GHPP LEGISLATIVE HISTORY
The GHPP was established in 1975 (Senate Bill 2265) to provide medical care for individuals with specific
genetically handicapping conditions.
Hemophilia was the first medical condition covered by the GHPP
Legislation throughout the years have added other medical conditions such as Cystic Fibrosis, Sickle Cell
Disease, Phenylketonuria, and Huntington’s disease
The last genetic condition added to the GHPP was Von Hippel-Lindau Disease
Legislation is required to add a new condition to be covered by the GHPP
California Health and Safety Code
Section 27: For purposes of this code:
(b) "Hereditary Disorders Act" means Article 1 (commencing with Section 124975) of
Chapter 1 of Part 5 of Division 106, and Sections 125050, 125055, 125060, and 125065.
PART 5. HEREDITARY DISEASES/CONGENITAL DEFECTS
CHAPTER 1. GENETIC PREVENTION SERVICES
Article 1. Hereditary Disorders Act ...................... 124975-124996
124975. The Legislature hereby finds and declares that:
(a) Each person in the State of California is entitled to health care commensurate
with his or her health care needs, and to protection from inadequate health services not
in the person's best interests.
(b) Hereditary disorders, such as sickle cell anemia, cystic fibrosis, and hemophilia,
are often costly, tragic, and sometimes deadly burdens to the health and well-being of
the citizens of this state.
(c) Detection through screening of hereditary disorders can lead to the alleviation of
the disability of some hereditary disorders and contribute to the further understanding
and accumulation of medical knowledge about hereditary disorders that may lead to their
eventual alleviation or cure.
(d) There are different severities of hereditary disorders, that some hereditary
disorders have little effect on the normal functioning of individuals, and that some
hereditary disorders may be wholly or partially alleviated through medical intervention
and treatment.
(e) All or most persons are carriers of some deleterious recessive genes that may be
transmitted through the hereditary process, and that the health of carriers of hereditary
disorders is substantially unaffected by that fact.
(f) Carriers of most deleterious genes should not be stigmatized and should not be
discriminated against by any person within the State of California.
(g) Specific legislation designed to alleviate the problems associated with specific
hereditary disorders may tend to be inflexible in the face of rapidly expanding medical
knowledge, underscoring the need for flexible approaches to coping with genetic
problems.
(h) State policy regarding hereditary disorders should be made with full public
knowledge, in light of expert opinion and should be constantly reviewed to consider
changing medical knowledge and ensure full public protection.
(i) The extremely personal decision to bear children should remain the free choice and
responsibility of the individual, and should not be restricted by the state.
(j) Participation of persons in hereditary disorders programs in the State of
California should be wholly voluntary, except for initial screening for phenylketonuria
(PKU) and other genetic disorders treatable through the California newborn screening
program. All information obtained from persons involved in hereditary
disorders programs in the state should be held strictly confidential.
20. (k) In order to minimize the possibility for the reoccurrence of abuse of genetic
intervention in hereditary disorders programs, all programs offering screening programs
for heredity disorders shall comply with the principles established in the Hereditary
Disorders
Act (Section 27). The Legislature finds it necessary to establish a uniform statewide
policy for the screening for heredity disorder in the State of California.
124977. (a) It is the intent of the Legislature that, unless otherwise specified, the
genetic disease testing program carried out pursuant to this chapter be fully supported
from fees collected for services provided by the program.
(b) (1) The department shall charge a fee to all payers for any tests or activities
performed pursuant to this chapter. The amount of the fee shall be established by
regulation and periodically adjusted by the director in order to meet the costs of this
chapter. Notwithstanding any other provision of law, any fees charged for prenatal
screening and followup services provided to persons enrolled in the Medi-Cal program,
health care service plan enrollees, or persons covered by health insurance policies,
shall be paid in full and deposited in the Genetic Disease Testing Fund or the Birth
Defects Monitoring Fund consistent with this section, subject to all terms and conditions
of each enrollee's or insured's health care service plan or insurance coverage, whichever
is applicable, including, but not limited to, copayments and deductibles applicable
to these services, and only if these copayments, deductibles, or limitations are
disclosed to the subscriber or enrollee pursuant to the disclosure provisions of Section
1363.
(2) The department shall expeditiously undertake all steps necessary to implement the
fee collection process, including personnel, contracts, and data processing, so as to
initiate the fee collection process at the earliest opportunity.
(3) Effective for services provided on and after July 1, 2002, the department shall
charge a fee to the hospital of birth, or, for births not occurring in a hospital, to
families of the newborn, for newborn screening and followup services. The hospital of
birth and families of newborns born outside the hospital shall make payment in
full to the Genetic Disease Testing Fund. The department shall not charge or bill Medi-
Cal beneficiaries for services provided under this chapter.
(4) (A) The department shall charge a fee for prenatal screening to support the
pregnancy blood sample storage, testing, and research activities of the Birth Defects
Monitoring Program.
(B) The prenatal screening fee for activities of the Birth Defects Monitoring Program
shall be ten dollars ($10).
(5) The department shall set guidelines for invoicing, charging, and collecting from
approved researchers the amount necessary to cover all expenses associated with research
application requests made under this section, data linkage, retrieval, data processing,
data entry, reinventory, and shipping of blood samples or their components and related
data management.
(6) The only funds from the Genetic Disease Testing Fund that may be used for the
purpose of supporting the pregnancy blood sample storage, testing, and research
activities of the Birth Defects Monitoring Program are those prenatal screening fees
assessed and collected prior to the creation of the Birth Defects Monitoring Program Fund
specifically to support those Birth Defects Monitoring Program activities.
(7) The Birth Defects Monitoring Program Fund is hereby created as a special fund in
the State Treasury. Fee revenues that are collected pursuant to paragraph (4) shall be
deposited into the fund and shall be available upon appropriation by the Legislature to
support the pregnancy blood sample storage, testing, and research activities of the Birth
Defects Monitoring Program. Notwithstanding Section 16305.7 of the Government Code,
interest earned on funds in the Birth Defects Monitoring Program Fund shall be deposited
as revenue into the fund to support the Birth Defects Monitoring
Program.
(c) (1) The Legislature finds that timely implementation of changes in genetic
screening programs and continuous maintenance of quality statewide services requires
expeditious regulatory and administrative procedures to obtain the most cost-effective
electronic data processing, hardware, software services, testing equipment, and testing
and followup services.
(2) The expenditure of funds from the Genetic Disease Testing Fund for these purposes
shall not be subject to Section 12102 of, and Chapter 2 (commencing with Section 10290)
of Part 2 of Division 2 of, the Public Contract Code, or to Division 25.2 (commencing
21. with Section 38070). The department shall provide the Department of Finance with
documentation that equipment and services have been obtained at the lowest cost
consistent with technical requirements for a comprehensive high-quality program.
(3) The expenditure of funds from the Genetic Disease Testing Fund for implementation
of the Tandem Mass Spectrometry screening for fatty acid oxidation, amino acid, and
organic acid disorders, and screening for congenital adrenal hyperplasia may be
implemented through the amendment of the Genetic Disease Branch Screening Information
System contracts and shall not be subject to Chapter 3 (commencing with Section 12100) of
Part 2 of Division 2 of the Public Contract Code, Article 4 (commencing with Section
19130) of Chapter 5 of Part 2 of Division 5 of Title 2 of the Government Code, and any
policies, procedures, regulations or manuals authorized by those laws.
(4) The expenditure of funds from the Genetic Disease Testing Fund for the expansion
of the Genetic Disease Branch Screening Information System to include cystic fibrosis,
biotinidase, and severe combined immunodeficiency (SCID) may be implemented through
the amendment of the Genetic Disease Branch Screening Information System contracts, and
shall not be subject to Chapter 2 (commencing with Section 10290) or Chapter 3
(commencing with Section 12100) of Part 2 of Division 2 of the Public Contract Code,
Article 4 (commencing with Section 19130) of Chapter 5 of Part 2 of Division 5
of Title 2 of the Government Code, or Sections 4800 to 5180,inclusive, of the State
Administrative Manual as they relate to approval of information technology projects or
approval of increases in the duration or costs of information technology projects. This
paragraph shall apply to the design, development, and implementation of the expansion,
and to the maintenance and operation of the Genetic Disease Branch Screening Information
System, including change requests, once the expansion is implemented.
(d)
(1) The department may adopt emergency regulations to implement and make specific this
chapter in accordance with Chapter 3.5 (commencing with Section 11340) of Part 1 of
Division 3 of Title 2 of the Government Code. For the purposes of the Administrative
Procedure Act, the adoption of regulations shall be deemed an emergency and necessary for
the immediate preservation of the public peace, health and safety, or general welfare.
Notwithstanding Chapter3.5 (commencing with Section 11340) of Part 1 of Division 3 of
Title 2 of the Government Code, these emergency regulations shall not be subject to the
review and approval of the Office of Administrative Law. Notwithstanding Sections 11346.1
and 11349.6 of the Government Code, the department shall submit these regulations
directly to the Secretary of State for filing. The regulations shall become effective
immediately upon filing by the Secretary of State. Regulations shall be subject to public
hearing within 120 days of filing with the Secretary of State and shall comply with
Sections 11346.8 and 11346.9 of the Government Code or shall be repealed.
(2) The Office of Administrative Law shall provide for the printing and publication of
these regulations in the California Code of Regulations. Notwithstanding Chapter 3.5
(commencing with Section 11340) of Part 1 of Division 3 of Title 2 of the Government
Code, the regulations adopted pursuant to this chapter shall not be repealed by the
Office of Administrative Law and shall remain in effect until revised or repealed by the
department.
(3) The Legislature finds and declares that the health and safety of California
newborns is in part dependent on an effective and adequately staffed genetic disease
program, the cost of which shall be supported by the fees generated by the program.
124980. The director shall establish any regulations and standards for hereditary
disorders programs as the director deems necessary to promote and protect the public
health and safety. Standards shall include licensure of master level genetic counselors
and doctoral level geneticists. Regulations adopted shall implement the principles
established in this section. These principles shall include, but not be limited to, the
following:
(a) The public, especially communities and groups particularly affected by programs on
hereditary disorders, should be consulted before any regulations and standards are
adopted by the department.
(b) The incidence, severity, and treatment costs of each hereditary disorder and its
perceived burden by the affected community should be considered and, where appropriate,
state and national experts in the medical, psychological, ethical, social, and economic
effects or programs for the detection and management of hereditary disorders shall be
consulted by the department.
22. (c) Information on the operation of all programs on hereditary disorders within the
state, except for confidential information obtained from participants in the programs,
shall be open and freely available to the public.
(d) Clinical testing procedures established for use in programs,facilities, and
projects shall be accurate, provide maximum information, and the testing procedures
selected shall produce results that are subject to minimum misinterpretation.
(e) No test or tests may be performed on any minor over the objection of the minor's
parents or guardian, nor may any tests be performed unless the parent or guardian is
fully informed of the purposes of testing for hereditary disorders and is given
reasonable opportunity to object to the testing.
(f) No testing, except initial screening for phenylketonuria (PKU)and other diseases
that may be added to the newborn screening program, shall require mandatory
participation, and no testing programs shall require restriction of childbearing, and
participation in a testing program shall not be a prerequisite to eligibility for,
or receipt of, any other service or assistance from, or to participate in, any other
program, except where necessary to determine eligibility for further programs of
diagnoses of or therapy for hereditary conditions.
(g) Pretest and posttest counseling services for hereditary disorders shall be
available through the program or a referral source for all persons determined to be or
who believe themselves to be at risk for a hereditary disorder. Genetic counseling shall
be provided by a physician, a certified advanced practice nurse with a genetics
specialty, or other appropriately trained licensed health care professional and shall be
nondirective, shall emphasize informing the client, and shall not require restriction of
childbearing.
(h) All participants in programs on hereditary disorders shall be protected from undue
physical and mental harm, and except for initial screening for phenylketonuria (PKU) and
other diseases that may be added to newborn screening programs, shall be informed of the
nature of risks involved in participation in the programs, and those determined to be
affected with genetic disease shall be informed of the nature, and where possible the
cost, of available therapies or maintenance programs, and shall be informed of the
possible benefits and risks associated with these therapies and programs.
(i) All testing results and personal information generated from hereditary disorders
programs shall be made available to an individual over 18 years of age, or to the
individual's parent or guardian. If the individual is a minor or incompetent, all testing
results that have positively determined the individual to either have, or be a carrier
of, a hereditary disorder shall be given through a physician or other source of health
care.
(j) All testing results and personal information from hereditary disorders programs
obtained from any individual, or from specimens from any individual, shall be held
confidential and be considered a confidential medical record except for information that
the individual, parent, or guardian consents to be released, provided that the individual
is first fully informed of the scope of the information requested to be released, of all
of the risks, benefits, and purposes for the release, and of the identity of those to
whom the information will be released or made available, except for data compiled without
reference to the identity of any individual, and except for research purposes, provided
that pursuant to Subpart A (commencing with Section 46.101) of Part 46 of Title 45 of the
Code of Federal Regulations entitled "Basic HHS Policy for Protection of Human Subjects,"
the research has first been reviewed and approved by an institutional review board that
certifies the approval to the custodian of the information and further certifies that in
its judgment the information is of such potentially substantial public health value that
modification of the requirement for legally effective prior informed consent of the
individual is ethically justifiable.
(k) A physician providing information to patients on expanded newborn screening shall
disclose to the parent the physician's financial interest, if any, in the laboratory to
which the patient is being referred.
(l) An individual whose confidentiality has been breached as a result of any violation
of the provisions of the Hereditary Disorders Act, as defined in subdivision (b) of
Section 27, may recover compensatory and civil damages. Any person who negligently
breaches the confidentiality of an individual tested under this article shall be subject
to civil damages of not more than ten thousand dollars ($10,000), reasonable attorney's
fees, and the costs of litigation. Any person who knowingly breaches the confidentiality
of an individual tested under this article shall be subject to payment of compensatory
damages, and in addition, may be subject to civil damages of fifty thousand dollars
23. ($50,000), reasonable attorney's fees, and the costs of litigation, or imprisonment in
the county jail of not more than one year. If the offense is committed under false
pretenses, the person may be subject to a fine of not more than one hundred thousand
dollars ($100,000), imprisonment in the county jail of not more than one year, or both.
If the offense is committed with the intent to sell, transfer, or use individually
identifiable health information for commercial advantage, personal gain, or malicious
harm, the person may be subject to a fine of not more than two hundred fifty thousand
dollars ($250,000), imprisonment in the county jail of not more than one year, or both.
(m) "Genetic counseling" as used in this section shall not include communications that
occur between patients and appropriately trained and competent licensed health care
professionals, such as physicians, registered nurses, and physicians assistants who are
operating within the scope of their license and qualifications as defined by their
licensing authority.
124981. (a) No person shall use the title of genetic counselor unless the person has
applied for and obtained a license from the department.
(b) The applicant for a genetic counselor license shall meet minimum qualifications
that include, but are not limited to, both of the following:
(1) Has earned a master's degree or above from a program specializing in or having
substantial course content in genetics.
(2) Has demonstrated competence by an examination administered or
approved by the department.
(c) The license shall be valid for three years unless at any time during that period
it is revoked or suspended. The license may be renewed prior to the expiration of the
three-year period.
(d) To qualify to renew the license, a license holder shall have completed 45 hours of
continuing education units during the three-year license renewal period. At least 30
hours of the continuing education units shall be in genetics.
(e) The license fee for an original license and license renewal shall not exceed two
hundred dollars ($200).
(f) Until the department has finalized regulations that are needed to implement
subdivision (b), the department shall license, upon application and payment of the
application fee specified in subdivision (e), a genetic counselor applicant who meets the
requirements of subdivision (b), is currently credentialed and in good standing with the
American Board of Genetic Counseling, and has no history of disciplinary action by the
board. When the department has finalized the regulations needed to implement subdivision
(b), genetic counselors who have received a license pursuant to this subdivision shall be
subject to the regulations implementing this section and Sections 124980 and 124982, and
this subdivision shall become inoperative.
(g) The department may revoke the license of a genetic counselor who is licensed
pursuant to subdivision (f) if either of the following occur:
(1) The counselor loses his or her credential granted by the American Board of Genetic
Counseling or is placed on probationary status.
(2) The counselor has been convicted of a felony charge that is substantially related
to the qualifications, functions, or duties of a genetic counselor. A plea of guilty or
nolo contendere to a felony charge shall be deemed a conviction for the purposes of this
paragraph.
(h) This section shall remain in effect only until January 1, 2014, and as of that
date is repealed, unless a later enacted statute, that is enacted before January 1, 2014,
deletes or extends that date.
(i) The amendments made to this section by the act adding this subdivision shall
become operative on July 1, 2011.
124981. (a) No person shall use the title of genetic counselor unless the person has
applied for and obtained a license from the department.
(b) The applicant for a genetic counselor license shall meet minimum qualifications
that include, but are not limited to, both of the following:
(1) Has earned a master's degree or above from a program specializing in or having
substantial course content in genetics.
(2) Has demonstrated competence by an examination administered or approved by the
department.
24. (c) The license shall be valid for three years unless at any time during that period
it is revoked or suspended. The license may be renewed prior to the expiration of the
three-year period.
(d) To qualify to renew the license, a license holder shall have completed 45 hours of
continuing education units during the three-year license renewal period. At least 30
hours of the continuing education units shall be in genetics.
(e) The license fee for an original license and license renewal shall not exceed two
hundred dollars ($200).
(f) This section shall become operative on January 1, 2014.
124982. (a) The department shall issue a temporary genetic counselor license to a person
to practice as a licensed genetic counselor who meets all of the following:
(1) The requirements for licensure set forth in subdivision (b) of Section 124981,
except passing the certification examination as required by paragraph (2) of subdivision
(b) of Section 124981.
(2) Either of the following requirements:
(A) The person meets the requirements to apply for and has applied for the first
available certification examination offered. The department may require an applicant for
a temporary genetic counselor license to provide documentation of acceptance for the
examination.
(B) The person meets the requirements to apply for the certification examination and
plans to apply to sit for the examination in the year following the year of the first
available examination. The department shall require the applicant to provide
documentation showing registration for the examination, when the documentation is
received by the applicant. After the applicant takes the examination, the department
shall require the applicant to provide documentation showing that the applicant took the
examination.
(3) Payment of a fee of two hundred dollars ($200).
(b) A temporary genetic counselor license shall be valid for 24 months and shall not
be extended or renewed.
(c) Notwithstanding subdivision (a), a temporary license issued pursuant to this
section shall expire upon any of the following events, whichever occurs earlier:
(1) The issuance of a license pursuant to Section 124981.
(2) Thirty days after notification of the department that an applicant has failed the
certification examination.
(3) The expiration date on the temporary license.
(d) A person holding a temporary genetic counselor license issued pursuant to this
section, shall be required to work under the supervision of a licensed genetic counselor
or a licensed physician and surgeon.
(e) The department may revoke the temporary license of a genetic counselor licensed
pursuant to this section if the person has been convicted of a felony charge that is
substantially related to the qualifications, functions, or duties of a genetic counselor.
A plea of guilty or nolo contendere to a felony charge shall be deemed a conviction for
the purposes of this subdivision.
(f) This section shall become operative on July 1, 2011.
124985. A violation of any of the provisions of the Hereditary Disorders Act (Section
27) or any of the regulations adopted pursuant to that act shall be punishable as a
misdemeanor.
124990. For the purposes of the Hereditary Disorders Act (Section 27), hereditary
disorders programs shall include, but not be limited to, all antenatal, neonatal,
childhood, and adult screening programs, and all adjunct genetic counseling services.
124991. (a) (1) The Birth Defects Monitoring Program, within the State Department of
Public Health, shall collect and store any umbilical cord blood samples it receives from
hospitals for storage and research. For purposes of ensuring financial stability, the
Birth Defects Monitoring Program shall ensure that the following conditions, alone or in
combination, are met:
(A) The fees paid by researchers pursuant to subdivision (c) shall be used for, and be
sufficient to cover the cost of, collecting and storing blood samples, including
umbilical cord blood samples.
25. (B) The department receives confirmation that a researcher has requested umbilical
cord blood samples from the Birth Defects Monitoring Program for research or has
requested umbilical cord blood samples to be included within a request for pregnancy or
newborn blood samples through the program and has provided satisfactory evidence that
adequate funding will be provided to the department from the fees paid by the researcher
for the request.
(C) The department receives federal grant moneys to pay for initial startup costs for
the collection and storage of umbilical
cord blood samples.
(2) The department may limit the number of umbilical cord blood samples the program
collects each year.
(b) (1) All information relating to umbilical cord blood samples collected and
utilized by the department shall be confidential, and shall be used solely for the
purposes of the program, or, if approved by the department, research. Access to
confidential information shall be limited to authorized persons who agree, in writing, to
maintain the confidentiality of that information. Notwithstanding any other provision of
law, when the blood samples specified in subdivision (c), including those samples with
any information identifying the person from whom the samples were obtained, are stored,
processed, analyzed, or otherwise shared for research purposes with non department staff,
those samples may be shared by the program with department-authorized researchers for
research purposes, and department representatives approved by the department, subject to
the confidentiality and security requirements for confidential information established in
this section and in Section103850.
(2) The department shall maintain an accurate record of all persons who are given
confidential information pursuant to this section, and any disclosure of confidential
information shall be made only upon written agreement that the information will be kept
confidential, used for its approved purpose, and not be further disclosed.
(3) A person who, in violation of a written agreement to maintain confidentiality,
discloses information provided pursuant to this section, or who uses information provided
pursuant to this section in a manner other than as approved pursuant to this section may
be denied further access to confidential information maintained by the department, and
shall be subject to a civil penalty not exceeding one thousand dollars ($1,000). The
penalty provided in this section does not limit or otherwise restrict a remedy,
provisional or otherwise, provided by law for the benefit of the department or a person
covered by this section.
(c) In order to implement this section, the department shall establish fees in an
amount that shall not exceed the costs of administering the program and the collection
and storage of these samples, which the department shall collect from researchers who
have been approved by the department and who seek to use the following types of blood
samples for research:
(1) Umbilical cord blood.
(2) Pregnancy blood collected by the Genetic Disease Screening Program, and stored by
the Birth Defects Monitoring Program.
(3) Newborn blood collected by the Genetic Disease Screening Program.
(d) Fees collected pursuant to subdivision (c) shall be collected by the department
and deposited into the Birth Defects Monitoring Program Fund, the Genetic Disease Testing
Fund, created pursuant to Section 124996, or the Cord Blood Banking Fund, which is hereby
created as a special fund in the State Treasury. The amount of fees deposited into each
of these funds shall be based on the program that is providing those pregnancy blood
samples, and the purpose for which the blood sample was obtained. Notwithstanding any
other provision of law, the moneys in the Birth Defects Monitoring Program Fund, the
Genetic Disease Testing Fund, and the Cord Blood Banking Fund that are collected pursuant
to subdivision (c), may be used by the department, upon appropriation by the Legislature,
for the purposes specified in subdivision (e).
(e) Moneys in those funds shall be used for the costs related to data management,
including data linkage and entry, and blood collection, storage, retrieval, processing,
inventory, and shipping.
(f) The department shall comply with the existing requirements in the Birth Defects
Monitoring Program, as set forth in Chapter 1 (commencing with Section 103825) of Part 2
of Division 102.
(g) The department, any entities approved by the department, and researchers shall
maintain the confidentiality of patient information and blood samples in accordance with
existing law and in the same manner as other medical record information with patient
26. identification that they possess, and shall use the information only for the following
purposes:
(1) Research to identify risk factors for children's and women's diseases.
(2) Research to develop and evaluate screening tests.
(3) Research to develop and evaluate prevention strategies.
(4) Research to develop and evaluate treatments.
(h) (1) For purposes of ensuring the security of a donor's personal information,
before any blood samples are released pursuant to this section for research purposes, the
State Committee for the Protection of Human Subjects (CPHS) shall determine if all of the
following criteria have been met:
(A) The department, contractors, researchers, or other entities approved by the
department have provided a plan sufficient to protect personal information from improper
use and disclosures, including sufficient administrative, physical, and technical
safeguards to protect personal information from reasonable anticipated threats to
the security or confidentiality of the information.
(B) The department, contractors, researchers, or other entities approved by the
department have provided a sufficient plan to destroy or return all personal information
as soon as it is no longer needed for the research activity, unless the program
contractors, researchers, or other entities approved by the department have demonstrated
an ongoing need for the personal information for the research activity and have provided
a long-term plan sufficient to protect the confidentiality of that information.
(C) The department, contractors, researchers, or other entities approved by the
department have provided sufficient written assurances that the personal information will
not be reused or disclosed to a person or entity, or used in a manner not approved in
the research protocol, except as required by law or for authorized oversight of the
research activity.
(2) As part of its review and approval of the research activity for the purpose of
protecting personal information held in agency databases, CPHS shall accomplish at least
all of the following:
(A) Determine whether the requested personal information is needed to conduct the
research.
(B) Permit access to personal information only if it is needed for the research
activity.
(C) Permit access only to the minimum personal information necessary for the research
activity.
(D) Require the assignment of unique subject codes that are not derived from personal
information in lieu of social security numbers if the research can be conducted without
social security numbers.
(E) If feasible, and if cost, time, and technical expertise permit, require the agency
to conduct a portion of the data processing for the researcher to minimize the release of
personal information.
(i) In addition to the fees described in subdivision (c), the department may bill a
researcher for the costs associated with the department's process of protecting personal
information, including, but not limited to, the department's costs for conducting a
portion of the data processing for the researcher, removing personal information,
encrypting or otherwise securing personal information, or assigning subject codes.
(j) This section does not prohibit the department from using its existing authority to
enter into written agreements to enable other institutional review boards to approve
research activities, projects or classes of projects for the department, provided that
the data security requirements set forth in this section are satisfied.
124995. The following programs shall comply with the regulations established pursuant to
the Hereditary Disorders Act (Section 27):
(a) The California Children's Services Program under Article 5 (commencing with
Section 123800) of Chapter 3 of Part 2.
(b) Prenatal testing programs for newborns under Sections 125050 to 125065, inclusive.
(c) Medical testing programs for newborns under the Maternal and Child Health Program
Act (Section 27).
(d) Programs of the genetic disease unit under Section 125000.
(e) Child health disability prevention programs under Article 6 (commencing with
Section 124025) of Chapter 3 of Part 2 and Section 120475.
(f) Genetically handicapped person's programs under Article 1 (commencing with Section
125125) of Chapter 2.
27. (g) Medi-Cal Benefits Program under Article 4 (commencing with Section 14131) of
Chapter 7 of Part 3 of Division 9 of the Welfare and Institutions Code.
124996. (a) The Genetic Disease Testing Fund is continued in existence as a special fund
in the State Treasury. The department may charge a fee for any activities carried out
pursuant to the Hereditary Disorders Act, including licensing activities conducted
pursuant to Section 124980. All moneys collected by the department under the act shall be
deposited in the Genetic Disease Testing Fund, that is continuously appropriated to the
department to carry out the purposes of the act.
(b) It is the intent of the Legislature that the program carried out pursuant to the
act be fully supported from fees collected under the act.
(c) The director shall adopt regulations establishing the amount of fees for
activities carried out pursuant to the act.
(d) The "Hereditary Disorders Act" or "act" referred to in this section is the act
described in subdivision (b) of Section 27.
California Health and Safety Code
CHAPTER 2. GENETIC DISEASE SERVICES
Article 1. Genetically Handicapped Persons Program ....... 125125-125191
•Defines the genetically handicapping conditions eligible to receive services
•Defines medical and social support services to be provided
•Describes reimbursement process, enrollment fees
•Describes staffing requirements to administer the program
•Describes requirements of participation
125125. This article shall be known and may be cited as the Holden-Moscone-Garamendi
Genetically Handicapped Person's Program.
125130. The Director of Health Care Services shall establish and administer a program
for the medical care of persons with genetically handicapping conditions, including
cystic fibrosis, hemophilia,sickle cell disease, Huntington's disease, Friedreich's
Ataxia, Joseph's disease, Von Hippel-Landau syndrome, and the following hereditary
metabolic disorders: phenylketonuria, homocystinuria,branched chain amino acidurias,
disorders of propionate and methylmalonate metabolism, urea cycle disorders, hereditary
orotic aciduria, Wilson's Disease, galactosemia, disorders of lactate and pyruvate
metabolism, tyrosinemia, hyperornithinemia, and other genetic organic acidemias that
require specialized treatment or service available from only a limited number of program-
approved sources.
The program shall also provide access to social support services, that may help
ameliorate the physical, psychological, and economic problems attendant to genetically
handicapping conditions, in order that the genetically handicapped person may function at
an optimal level commensurate with the degree of impairment.
The medical and social support services may be obtained through physicians and
surgeons, genetically handicapped person's program specialized centers, and other
providers that qualify pursuant to the regulations of the department to provide the
services. "Medical care," as used in this section, is limited to noncustodial medical
and support services.
The director shall adopt regulations that are necessary for the implementation of this
article.
125135. As used in this article, "genetically handicapping condition" shall mean a
disease that is accepted as being genetic in origin by the American Society of Human
Genetics.
125140. The program established under this article shall include any or all of the
following medical and social support services:
28. (a) Initial intake and diagnostic evaluation.
(b) The cost of blood transfusion and use of blood derivatives, or both.
(c) Rehabilitation services, including reconstructive surgery.
(d) Expert diagnosis.
(e) Medical treatment.
(f) Surgical treatment.
(g) Hospital care.
(h) Physical and speech therapy.
(i) Occupational therapy.
(j) Special treatment.
(k) Materials.
(l) Appliances and their upkeep, maintenance, and care.
(m) Maintenance, transportation, or care incidental to any other form of services.
(n) Respite care or other existing resources (e.g., sheltered workshops).
(o) Genetic and long-term psychological counseling.
(p) Appropriate administrative staff resources to carry out this article. The staff
shall include, but not be limited to, at least one case manager per each 350 clients.
125150. The director shall establish the rate structure for reimbursement of physicians
and supportive services. The rates shall not be less than the amounts paid for provider
services under the Medi-Cal Act (Chapter 7 (commencing with Section 14000) of Part 3 of
Division 9 of the Welfare and Institutions Code).
125155. Reimbursement under this article shall not be made for any services that are
available to the recipient under any other private, state, or federal programs or under
other contractual or legal entitlements, except for those instances where the department
determines that prolonged use of employer health insurance would jeopardize the
recipient's employment. However, no provision in this article shall be construed as
limiting in any way state participation in any federal governmental program for medical
care of persons with genetically handicapping conditions.
125155.1. (a) Any person found eligible for services under this article whose employer-
sponsored health coverage is later terminated or any person who applied for services
provided under this article whose employer-sponsored health coverage was terminated
during the six-month period prior to the date he or she applied for services pursuant to
this article shall be determined ineligible for the services, unless the reason his or
her employer-sponsored health coverage was terminated was because of one of the
following:
(1) The individual for whom the employer-sponsored coverage had been available lost
coverage because of one or more of the following reasons:
(A) A loss of employment or a change in employment status.
(B) A change of address to a ZIP Code that is not covered by the employer-sponsored
health coverage.
(C) The individual's employer discontinued health benefits to all employees or
dependents, or ceased to provide coverage or contributions for the category of employees
or dependents applicable to the person or applicant.
(D) The death of, or a legal separation or divorce from, the individual through whom
the applicant was covered.
(2) The applicant's employer-sponsored health coverage became unavailable because the
services paid for under that coverage attained the lifetime coverage limit.
(3) Coverage was under a COBRA policy and the COBRA coverage period has ended.
(b) A person who applies for services provided pursuant to this article shall certify,
at the time of application, under penalty of perjury, that he or she was not covered by
employer-sponsored health coverage during the six-month period prior to the date of his
or her application or, if he or she was covered by employer-sponsored health coverage,
attest to why one of the reasons listed in subdivision (a)is applicable to him or her and
provide documentation from the employer-sponsored health coverage that supports his or
her attestation.
(c) A person who has been found eligible for services provided pursuant to this
article who is covered by employer-sponsored health coverage that is terminated shall
29. notify the Genetically Handicapped Persons Program within 45 days of the effective date
of the termination and, when applicable, provide the program with the certification
described in subdivision (b).
(d) An applicant or eligible person who fails to comply with subdivisions (b) and (c)
shall be ineligible for services pursuant to
this article for six months. The department shall provide written notice to all persons
found to be ineligible pursuant to this section. The notice shall provide information on
the ability of the person to appeal or seek a waiver of determinations of ineligibility.
(e) The department shall provide a process to appeal decisions of ineligibility based
on this section in accordance with the procedures for resolution of complaints and
appeals established for applicants and persons eligible for services pursuant to Article
5 (commencing with Section 123800) of Chapter 3 of Part 2.
(f) The director, on a case-by-case basis, may waive determinations of ineligibility
pursuant to this section, or reduce the time periods set forth in subdivision (a) or
subdivision (d), if the director determines that the determination or the time periods
will result in undue hardship.
(g) Notwithstanding Chapter 3.5 (commencing with Section 11340) of Part 1 of Division
3 of Title 2 of the Government Code, the department may implement this section by means
of Genetically Handicapped Persons Program policy letters. Following consultation
with a stakeholder workgroup consisting of, but not limited to, provider associations,
provider representatives, and consumer groups to ensure stakeholder participation in the
implementation of this section, including, but not limited to, any changes deemed
necessary by the department and the stakeholder workgroup to update the application for
enrollment form and the development of regulations, the department shall, within 18
months from the effective date of this section, adopt any necessary regulations in
accordance with the requirements of Chapter 3.5 (commencing with Section 11340) of Part 1
of Division 3 of Title 2 of the Government Code.
125157. (a) The department may require a client under this article to apply to enroll or
otherwise participate in any other state or federal program or other contractual or legal
entitlement that would provide services to the client that would otherwise be reimbursed
pursuant to this article.
(b) The department may, when it determines that it is cost effective, pay the premium
for, or otherwise subsidize the subscriber cost-sharing obligation for, third-party
health coverage for a person eligible for services under this article.
(c) The department may, for a person eligible for services under this article, when
the person's third-party health coverage would lapse due to loss of employment, change in
health status, lack of sufficient income or financial resources, or any other reason,
continue the health coverage by paying the costs of continuation of group coverage
pursuant to federal law or converting from a group to individual plan, when the
department determines that it is cost effective.
(d) Notwithstanding Chapter 3.5 (commencing with Section 11340) of Part 1 of Division
3 of Title 2 of the Government Code, the department may implement this section by means
of Genetically Handicapped Persons Program policy letters. Following consultation
with a stakeholder workgroup consisting of, but not limited to, provider associations,
provider representatives, and consumer groups to ensure stakeholder participation in the
implementation of this section, including, but not limited to, any changes deemed
necessary by the department and the stakeholder workgroup to update the application for
enrollment form and the development of regulations, the department shall, within 18
months from the effective date of this section, adopt any necessary regulations in
accordance with the requirements of Chapter 3.5 (commencing with Section 11340) of Part 1
of Division 3 of Title 2 of the Government Code.
125160. The department shall receive and expend all funds made available to it by the
federal government, the state, its political subdivisions or from other sources for the
purposes of this article. Payment for genetically handicapped person's program shall be
made by the department.
125166. (a) Commencing July 1, 2009, except as provided in subdivision (d), each client
determined or redetermined by the department to be eligible for services provided
pursuant to this article shall pay an annual enrollment fee to the department as set
forth in this section.
30. (b) (1) There shall be an annual enrollment fee based on the client's adjusted gross
income or, if the client is a minor, the client's parents' or legal guardians' combined
adjusted gross income, as reported on the relevant state or federal income tax forms for
the previous tax year. In calculating the enrollment fee where both a state and a federal
income tax form has been filed, the higher of the two adjusted gross income amounts shall
be used.
(2) For adjusted gross income between 200 and 299 percent of the federal poverty
level, the annual enrollment fee shall be 1.5 percent of adjusted gross income.
(3) For adjusted gross income equal to or greater than 300 percent of the federal
poverty level, the annual enrollment fee shall be 3 percent of adjusted gross income.
(4) In the event the annual enrollment fee determined pursuant to paragraph (2) or (3)
exceeds the cost of care incurred during the applicable year, the department shall reduce
the enrollment fee by refund or credit to an amount equal to the cost of care.
(c) (1) Payment of the enrollment fee is a condition of program participation.
(2) The department may arrange for periodic payment of the fee during the year.
(3) The director, on a case-by-case basis, may waive or reduce the amount of an
enrollment fee if the director determines payment of the fee will result in undue
hardship for the family. Otherwise, failure to pay or arrange for payment of the
enrollment fee within 60 days of the due date shall result in disenrollment and
ineligibility for coverage of treatment services effective 60 days after the due
date of the fee.
(d) The enrollment fee shall not be charged in the following cases:
(1) The client is eligible for the full scope of Medi-Cal benefits, without being
required to pay a share of cost, at the time of enrollment fee determination.
(2) The client who is otherwise eligible to receive services has,
or if the client is a minor, the client's parents or guardians have, an adjusted gross
income of less than 200 percent of the federal poverty level.
(e) All enrollment fees shall be used in support of the program for services provided
pursuant to this article.
(f) Notwithstanding Chapter 3.5 (commencing with Section 11340) of Part 1 of Division
3 of Title 2 of the Government Code, the department may implement this section by means
of Genetically Handicapped Persons Program policy letters. Following consultation
with a stakeholder workgroup consisting of, but not limited to, provider associations,
provider representatives, and consumers groups to ensure stakeholder participation in the
implementation of this section, including, but not limited to, any changes to update the
application for enrollment form and the development of regulations, the department
shall, within 18 months from the effective date of this section, adopt regulations in
accordance with the requirements of Chapter 3.5 (commencing with Section 11340) of Part 1
of Division 3 of Title 2 of the Government Code.
125170. The department shall maintain sufficient, appropriate staff to carry out this
article.
125175. The health care benefits and services specified in this article, to the extent
that the benefits and services are neither provided under any other federal or state law
nor provided nor available under other contractual or legal entitlements of the person,
shall be provided to any patient who is a resident of this state and is made
eligible by this article. After the patient has utilized the contractual or legal
entitlements, the payment liability under Section 125165 or Section 125166, whichever
shall be applicable at the time, shall then be applied to the remaining cost of
genetically handicapped person's services.
125180. The department shall require all applicants to the program who may be eligible
for cash grant public assistance or for Medi-Cal to apply for Medi-Cal eligibility prior
to becoming eligible for funded services.
125190. Notwithstanding any other provision of law, the department is considered to be
the purchaser, but not the dispenser or distributor, of blood factor products under the
Genetically Handicapped Person's Program. The department may receive manufacturers'
discounts, rebates, or refunds based on the quantities purchased under the Genetically
31. Handicapped Person's Program. The discounts, rebates, or refunds received pursuant to
this section shall be separate from any agreements for discounts, rebates, or
refunds negotiated pursuant to Section 14105.3 of the Welfare and Institutions Code or
any other program.
125191. (a) The department may enter into contracts with one or more manufacturers on a
negotiated or bid basis as the purchaser, but not the dispenser or distributor, of factor
replacement therapies under the Genetically Handicapped Person's Program for the purpose
of enabling the department to obtain the full range of available therapies and services
required for clients with hematological disorders at the most favorable price and to
enable the department, notwithstanding any other provision of state law, to obtain
discounts, rebates, or refunds from the manufacturers based upon the large quantities
purchased under the program. Nothing in this subdivision shall interfere with the usual
and customary distribution practices of factor replacement therapies. In order to achieve
maximum cost savings, the Legislature hereby determines that an expedited contract
process under this section is necessary. Therefore, a contract under this subdivision may
be entered into on a negotiated basis and shall be exempt from Chapter 2 (commencing with
Section 10290) of Part 2 of Division 2 of the Public Contract Code and Chapter 6
(commencing with Section 14825) of Part 5.5 of Division 3 of the Government Code.
Contracts entered pursuant to this subdivision shall be confidential and shall be exempt
from disclosure under the California Public Records Act (Chapter 3.5 (commencing
with Section 6250) of Division 7 of Title 1 of the Government Code).
(b) (1) Factor replacement therapy manufacturers shall calculate and pay interest on
late or unpaid rebates. The interest shall not apply to any prior period adjustments of
unit rebate amounts or department utilization adjustments. Manufacturers shall calculate
and pay interest on late or unpaid rebates for quarters that begin on or after the
effective date of the act that added this subdivision.
(2) Following the final resolution of any dispute regarding the amount of a rebate,
any underpayment by a manufacturer shall be paid with interest calculated pursuant to
paragraph (4), and any overpayment, together with interest at the rate calculated
pursuant to paragraph (4), shall be credited by the department against future rebates
due.
(3) Interest pursuant to paragraphs (1) and (2) shall begin accruing 38 calendar days
from the date of mailing the invoice, including supporting utilization data sent to the
manufacturer. Interest shall continue to accrue until the date of mailing of the
manufacturer's payment.
(4) Interest rates and calculations pursuant to paragraphs (1) and (2) shall be
identical to interest rates and calculations set forth in the federal Centers for
Medicare and Medicaid Services' Medicaid Drug Rebate Program Releases or regulations.
(c) If the department has not received a rebate payment, including interest, within
180 days of the date of mailing of the invoice, including supporting utilization data, a
factor replacement therapy manufacturer's contract with the department shall be deemed to
be in default and the contract may be terminated in accordance with the terms of the
contract. This subdivision does not limit the department's right to otherwise terminate a
contract in accordance with the terms of that contract.
(d) The department may enter into contracts on a bid or negotiated basis with
manufacturers, distributors, dispensers, or suppliers of pharmaceuticals, appliances,
durable medical equipment, medical supplies, and other product-type health care services
and laboratories for the purpose of obtaining the most favorable prices to the state and
to assure adequate access and quality of the product or service. In order to achieve
maximum cost savings, the Legislature hereby determines that an expedited contract
process under this subdivision is necessary. Therefore, contracts under this subdivision
may be entered into on a negotiated basis and shall be exempt from Chapter 2 (commencing
with Section 10290) of Part 2 of Division 2 of the Public Contract Code and Chapter 6
(commencing with Section 14825) of Part 5.5 of Division 3 of the Government Code.
(e) The department may contract with one or more manufacturers of each multisource
prescribed product or supplier of outpatient clinical laboratory services on a bid or
negotiated basis. Contracts for outpatient clinical laboratory services shall require
that the contractor be a clinical laboratory licensed or certified by the State of
California or certified under Section 263a of Title 42 of the United States Code. Nothing
in this subdivision shall be construed as prohibiting the department from contracting
with less than all manufacturers or clinical laboratories, including just one
manufacturer or clinical laboratory, on a bid or negotiated basis.
32. 17 CA ADC § 2930-2931
Article 4. Genetically Handicapped Persons Program
California Code of Regulations
Title 17. Public Health
Division 1. State Department of Health Services
• Identify Special Care Centers for GHPP clients to receive diagnostic and medical services –
inpatient, outpatient and home
o ◦Hemophilia Center
o ◦Cystic Fibrosis Center
o ◦Sickle Cell Disease Center
o ◦Special Inherited Neurologic Disease Center
o ◦Metabolic Disease Center
•Provides the list of GHPP eligible conditions
§ 2930. Genetically Handicapped Persons Program.
The Genetically Handicapped Persons Program (GHPP) is a health care program within the California Children Services
(CCS) Branch which provides medical care and other related services for persons with the genetically handicapping
conditions specified in Section 2932 of this chapter.
§ 2931. California Children Services/Genetically Handicapped Persons Program Special Care Center.
(a) A California Children Services (CCS)/Genetically Handicapped Persons Program (GHPP) Special Care Center is a
medical center which provides diagnostic and treatment services (inpatient, outpatient and home) to CCS clients
under 21 years of age who have GHPP eligible conditions, and to GHPP clients over 21 years of age.
(b) California Children Services/Genetically Handicapped Persons Program Special Care Centers include the following:
(1) Hemophilia Center
(2) Cystic Fibrosis Center
(3) Sickle Cell Disease Center
(4) Specified Inherited Neurologic Disease Center
(5) Amniocentesis Center
(6) Metabolic Disease Center
§ 2932. Medical Eligibility -Conditions.
(a) The following medical conditions are eligible for services through the GHPP program:
(1) Hemophilia, which includes any congenital hereditary hemorrhagic state due to a defect in the hemostatic
mechanism resulting from a deficiency or abnormality in one of the plasma clotting factors or platelets including:
(A) Factor I deficiency
33. (B) Factor II deficiency
(C) Factor V deficiency
(D) Factor VII deficiency
(E) Factor VIII deficiency
(F) Factor IX deficiency
(G) Factor X deficiency
(H) Factor XI deficiency
(I) Factor XIII deficiency
(J) von Willebrand's Disease
(K) Congenital hereditary platelet deficiency diseases or dysfunction such as congenital thrombasthenia (Glanzman's
thrombasthenia) and thrombocytopathia
(2) Cystic fibrosis
(3) Hemoglobinopathies with anemia including:
(A) Sickle Cell Disease, but not sickle cell trait
(B) Thalassemia
(4) Chronic degenerative neurological diseases:
(A) Huntington's Disease
(B) Joseph's Disease
(C) Friedreich's Ataxia, genetic ataxias due to spinocerebellar degeneration.
1. Hereditary spastic paraplegia
2. Roussy-Levy Syndrome
3. Olivopontocerebellar degeneration
4. Refsum's disease
5. Charcot-Marie-Tooth Syndrome
(5) The following metabolic diseases:
(A) Disorder of amino-acid transport and metabolism
1. Phenylketonuria
2. Other disturbances of armoatic amino-acid metabolism
a. Tyrosinemia
3. Disturbances of branched chain amino-acid metabolism
a. Disturbances of metabolism of leucine, isoleucine, valine
b. Hypervalinemia
c. Intermittent branched-chain ketonuria
34. d. Leucine-induced hypoglycemia
e. Leucinosis
f. Maple syrup urine disease
g. Propionic and methylmalonic acidemias
h. Lactic and pyruvate metabolism disorders
i. Hereditary orotic (pyrimidine acidemia)
4. Disturbances of sulphur bearing amino-acid metabolism
a. Homocystinuria
b. Hypermethioninemia
5. Urea cycle disorders
a. Argininosuccinic aciduria
b. Citrullinemia
c. Disorders of metabolism of ornithine, citrulline, argininossuccinic acid, arginine, and ammonia
d. Hyperammonemia
e. Hyperornithinemia
(B) Disorders of carbohydrate transport and metabolism
1. Galactosemia
a. Galactose-1-phosphate uridyl transferase deficiency
b. Galactosuria
(C) Disorders of copper metabolism
1. Wilson's disease
Genetically Handicapped Persons Program policy letters
35. STATE OF CALIFORNIA -HEALTH AND HUMAN SERVICES AGENCY GRAY DAVIS, Governor
DEPARTMENT OF HEAL TH SERVICES
Genetically Handicapped Persons Program
Policy Letter: G-01-1200
Index: Benefits
December 22, 2000
TO: GENETICALL y HANDICAPPED PERSONS PROGRAM (GHPP)
SPECIAL CARE CENTER (SCC) MEDICAL DIRECTORS AND STATE
CHILDREN'S MEDICAL SERVICES (CMS) GHPP BRANCH STAFF
SUBJECT: GHPP OUTPATIENT SCC SERVICES
PURPOSE
The purpose of this letter is to:
Inform GHPP SCCs of procedural changes for GHPP SCC authorization,
provider billing, and reimbursement.
.
Provide specific information on SCC services available for individual clients
with various types of healthcare insurance coverage (e.g., managed care
plans, Medi-Cal, Medicare, indemnity plans).
.
Distribute new Health Care Financing Administration Common Procedure
Coding Systems (HCPCS) Level III procedure codes for GHPP SCC services.
.
Explain the transition from the previous GHPP SCC codes to the newly
established GHPP SCC codes.
.
Provide guidelines for GHPP SCC provider reimbursement and claims
processing.
.
Provide the following enclosures:.
./ Billing guidelines for GHPP SCC providers.
./ Explanation for appropriate utilization of the new GHPP SCC codes; and
A table linking the new GHPP SCC codes to the old GHPP SCC codes
being discontinued;
./
714/744 p STREET
p .0. BOX 942732
SACRAMENTO, CA 94234-7320
(916) 654-0499
36. GHPP Policy Letter No. G-01-1200
Page 2
December 22, 2000
BACKGROUND
GHPP has a system of SCCs that provide comprehensive, coordinated health
care to clients with specific genetic conditions (i.e., IV, A). GHPP SCCs are
multi-disciplinary, multi-specialty teams that evaluate the GHPP client's medical
condition and develop a comprehensive, family centered plan of healthcare that
facilitates the provision of timely, coordinated treatment. GHPP SCCs are located
throughout the State, usually in conjunction with tertiary level medical centers.
Each SCC is individually reviewed by the CMS Branch to ensure that the SCC
complies with GHPP/California Children's Services (CCS) program standards.
GHPP authorizes SCC services to clients eligible for the program.
III. POLICY
A. Effective the date of this letter:
. GHPP shall authorize SCC services for all GHPP clients who are
required by program policy to receive care through GHPP approved
outpatient special care centers.
These services shall be authorized as GHPP benefits for all eligible
GHPP clients.
.
B. The following new HCPCS Level III codes for GHPP SCC services are
effective on or after September 28, 2000:
24300 *
Center Coordinator, Allied Healthcare Professionals
(Comprehensive team case conference coordinator: nurse
specialist, social worker, registered dietitian, and other allied
healthcare professionals )
Z4301 Assessment, Evaluation, and/or Intervention, Nurse
Specialist
Z4302 *
Case Conference, Other Allied Healthcare Professionals
(Comprehensive team case conference participants)
Z4303 GHPP Required Report of Status of Patient with Complex
Medical Condition, Periodic Intermediate Level Report
II.
37. GHPP Policy Letter No. G-O1-12OO
Page 3
December 22, 2000
Z4304 GHPP Required Report of Status of Patient with Complex
Medical Condition, Periodic Extensive, Comprehensive Level
Report
24305 Center Coordinator, Physician (Comprehensive team case
conference coordinator)
Z4306 Medical Case Conference, Physician (Comprehensive team
case conference participant)
Z4307 Assessment, Evaluation, and/or Intervention, Medical Social
Worker
Z430B Assessment, Evaluation, and/or Intervention, Registered
Dietitian
Z4310 Case Conference, Nurse Specialist (Comprehensive team
case conference participant)
Z4311 Case Conference, Medical Social Worker (Comprehensive
team case conference participant)
Z4312 Case Conference, Registered Dietitian (Comprehensive
team case conference participant)
Z4313 Group Teaching, Counseling and Support, Physician
Z4314 *
Group Teaching, Counseling and Support, Other Allied
Healthcare Professionals (nurse specialist, social worker,
registered dietitian, or other allied healthcare professionals)
Z4315 Physician/Client (Family) Conference
For the purposes of this numbered letter "Other Allied
Healthcare Professionals" refers to physical therapists,
occupational therapists, audiologists, and speech
therapists/pathologists unless otherwise specified.
c. The following HCPCS Level III codes for "CCS/GHPP Unique Services,"
will no longer be utilized:
Z5400 Allied Professional -Coordinator
38. GHPP Policy Letter No. G-01-1200
Page 4
December 22, 2000
Z5402 Allied Professional NEC -Visit
Z5404 Allied Professional NEC -Case Conference
Z5426 Periodic Multiple Chart Review
Z5427 Comprehensive In-Depth Chart Review
25428 Coordinator/Medical
25434 Case Conference/Medical
Z5436 Case Conference/Medical
Claims with these procedure codes as specified in item Ill, C, with
dates of service on or after January 1, 2001, will be denied.
D. The following HCPCS Level III codes for "CCS/GHPP Unique Services,"
will remain in effect:
Z5406 Telephone Consultation/Allied Healthcare Professional
Z5432 T elephone Consultation/Med ical
IV. Implementation
A Referral of client to a SCC
GHPP clients shall be referred to the appropriate GHPP-approved SCC
for diagnosis, evaluation, medical management, and coordination of care
when the client has or is suspected of having a GHPP medically eligible
condition requiring SCC evaluation and follow-up. These conditions
include:
ICD-9 Code DiaQnosis Description
2701
2702
2703
2704
Phenylketonuria (PKU)
Tyrosinemia
Disturbances of Branched-Chain Amino-Acid
Metabolism
Disturbances of Sulphur-Bearing Amino-Acid
Metabolism
