Fifth Substitute H.B. 272

Senator Curtis S. Bramble proposes the following substitute bill:

1 PILOT PROGRAM FOR AUTISM SPECTRUM
2 DISORDERS SERVICES
3 2012 GENERAL SESSION
4 STATE OF UTAH
5 Chief Sponsor: Ronda Rudd Menlove
6 Senate Sponsor: Curtis S. Bramble
7
8 LONG TITLE
9 General Description:
10 This bill creates a pilot program for autism spectrum disorders services in the Medicaid
11 program; for the private sector, non-Medicaid population through the Autism Treatment
12 Account; and for certain children of state employees administered by Public Employees'
13 Benefit and Insurance Program Act.
14 Highlighted Provisions:
15 This bill:
16 . provides a funding mechanism for the autism Medicaid waiver;
17 . directs the state Medicaid program to develop a Medicaid waiver to provide proven
18 effective services for children between the ages of two to six with autism spectrum
19 disorder;
20 . requires the department to convene a public process to develop the Medicaid
21 waiver;
22 . requires the department to include services for children located in rural and
23 underserved areas of the state;
24 . requires the department to measure the cost and the effectiveness of the treatments
25 and services for autism spectrum disorders;

26 . requires the department to report to the Legislative Health and Human Services
27 Interim Committee by November 30, 2013;
28 . amends provisions of the Autism Treatment Account to:
29 . update terminology used for autism treatment options;
30 . amend the uses of the account to focus on evaluation and treatment of children
31 between the ages of two to six years old with autism spectrum disorders;
32 . work with telehealth services to reach children in rural and underserved areas of
33 the state; and
34 . create a mechanism to identify children qualified for services, provide and pay
35 for services for children, and to evaluate effectiveness of treatments; and
36 . establishes a pilot program for autism services for certain children of state
37 employees administered by the Public Employees' Benefit and Insurance Program.
38 Money Appropriated in this Bill:
39 This bill appropriates in fiscal year 2011-12:
40 . to Department of Health - Medicaid Optional Services
41 . from General Fund, One-time $1,500,000 to fund autism treatment;
42 . to Department of Human Services - Child and Family Services
43 . from General Fund, One-time ($1,500,000) to fund autism treatment; and
44 . to the Department of Health - Medicaid Optional Services
45 . from General Fund, One-time $3,000,000 to fund autism treatment.
46 This bill provides intent language making certain fiscal year 2012 appropriations in the
47 Department of Health nonlapsing for purposes of studying children with autism
48 spectrum disorders.
49 This bill appropriates for fiscal year 2012-13:
50 . to Autism Restricted Account
51 . from General Fund, One-time $1,000,000 to fund autism treatment.
52 . to Department of Health - Family and Preparedness
53 . from Autism Restricted Account, One-time $1,000,000 to fund autism
54 treatment.
55 Other Special Clauses:
56 None

57 Utah Code Sections Affected:
58 AMENDS:
59 26-18-402, as last amended by Laws of Utah 2010, Chapter 340
60 26-52-102, as enacted by Laws of Utah 2010, Chapter 69
61 26-52-201, as enacted by Laws of Utah 2010, Chapter 69
62 26-52-202, as last amended by Laws of Utah 2011, Chapter 340
63 ENACTS:
64 26-18-407, Utah Code Annotated 1953
65 26-52-203, Utah Code Annotated 1953
66 49-20-411, Utah Code Annotated 1953
67
68 Be it enacted by the Legislature of the state of Utah:
69 Section 1. Section 26-18-402 is amended to read:
70 26-18-402. Medicaid Restricted Account.
71 (1) There is created a restricted account in the General Fund known as the Medicaid
72 Restricted Account.
73 (2) (a) Except as provided in Subsection (3), the following shall be deposited into the
74 Medicaid Restricted Account:
75 (i) any general funds appropriated to the department for the state plan for medical
76 assistance or for the Division of Health Care Financing that are not expended by the
77 department in the fiscal year for which the general funds were appropriated and which are not
78 otherwise designated as nonlapsing shall lapse into the Medicaid Restricted Account;
79 (ii) any unused state funds that are associated with the Medicaid program, as defined in
80 Section 26-18-2 , from the Department of Workforce Services and the Department of Human
81 Services; and
82 (iii) any penalties imposed and collected under:
83 (A) Section 17B-2a-818.5 ;
84 (B) Section 19-1-206 ;
85 (C) Section 79-2-404 ;
86 (D) Section 63A-5-205 ;
87 (E) Section 63C-9-403 ; or

88 (F) Section 72-6-107.5 .
89 (b) The account shall earn interest and all interest earned shall be deposited into the
90 account.
91 (c) The Legislature may appropriate money in the restricted account to fund programs
92 that expand medical assistance coverage and private health insurance plans to low income
93 persons who have not traditionally been served by Medicaid, including the Utah Children's
94 Health Insurance Program created in Chapter 40.
95 (3) For fiscal years 2008-09, 2009-10, [and] 2010-11, 2011-12, and 2012-13 the
96 following funds are nonlapsing:
97 (a) any general funds appropriated to the department for the state plan for medical
98 assistance, or for the Division of Health Care Financing that are not expended by the
99 department in the fiscal year in which the general funds were appropriated; and
100 (b) funds described in Subsection (2)(a)(ii).
101 Section 2. Section 26-18-407 is enacted to read:
102 26-18-407. Medicaid waiver for autism spectrum disorder.
103 (1) For purposes of this section "autism spectrum disorder" means a pervasive
104 developmental disorder as defined by the most recent edition of the Diagnostic and Statistical
105 Manual on Mental Disorders, including:
106 (a) Autistic disorder;
107 (b) Asperger's disorder; and
108 (c) pervasive developmental disorder not otherwise specified.
109 (2) The department shall, by July 1, 2012, apply for a Medicaid waiver with the
110 Centers for Medicare and Medicaid Services within the United States Department of Health
111 and Human Services to implement an autism spectrum disorders program within the state
112 Medicaid program.
113 (3) The autism spectrum disorders waiver program shall:
114 (a) provide services to children between the ages of two years and six years with
115 autism spectrum disorders;
116 (b) accept applications for the program during periods of open enrollment;
117 (c) initially provide services for up to 500 children, as funding permits;
118 (d) convene a public process with the Department of Human Services to develop the

119 benefits and services to include in the autism waiver program, including:
120 (i) demonstrated effective treatments;
121 (ii) methods to engage family members in the treatment process; and
122 (iii) outreach to children in rural and underserved areas of the state; and
123 (e) include a mechanism to evaluate the cost, effectiveness, and outcomes of the
124 different services provided as part of the autism waiver program.
125 (4) The department shall report to the Legislature's Health and Human Services Interim
126 Committee by November 30, 2013, and prior to each November 30 thereafter while the waiver
127 is in effect regarding:
128 (a) the number of children diagnosed with autism spectrum disorder and the number of
129 children served under the waiver;
130 (b) success involving families in supporting treatment plans for autistic children;
131 (c) the cost of the autism waiver program; and
132 (d) the outcomes and effectiveness of the services offered by the autism waiver
133 program.
134 Section 3. Section 26-52-102 is amended to read:
135 26-52-102. Definitions.
136 As used in this chapter:
137 (1) "Account" means the Autism Treatment Account created in Section 26-52-201 .
138 (2) "Applied behavior analysis" means the design, implementation, and evaluation of
139 environmental modifications using behavioral stimuli and consequences to produce socially
140 significant improvement in human behavior, including the use of direct observation,
141 measurement, and functional analysis of the relationship between environment and behavior
142 that are:
143 (a) necessary to develop, maintain, or restore, to the maximum extent practicable, the
144 functioning of an individual; and
145 (b) provided or supervised by a:
146 (i) board certified behavior analyst; or
147 (ii) a licensed psychologist with equivalent university training and supervised
148 experience who is working toward board certification in applied behavior analysis.
149 [(2)] (3) "Autism spectrum disorder" means a pervasive developmental disorder as

150 defined by the most recent edition of the Diagnostic and Statistical Manual on Mental
151 Disorders, including:
152 (a) Autistic disorder;
153 (b) Asperger's disorder; and
154 (c) pervasive developmental disorder not otherwise specified.
155 [(3)] (4) "Committee" means the Autism Treatment Account Advisory Committee
156 created under Section 26-52-202 .
157 [(4) "Early intensive behavior therapy" means therapy that:]
158 [(a) involves intensive behavioral intervention over an extended period of time;]
159 [(b) is evidence-based; and]
160 [(c) is generally accepted by the medical community or the American Academy of
161 Pediatrics as an effective treatment for young children with an autism spectrum disorder.]
162 Section 4. Section 26-52-201 is amended to read:
163 26-52-201. Autism Treatment Account.
164 (1) There is created within the General Fund a restricted account known as the Autism
165 Treatment Account.
166 (2) (a) The account shall consist of:
167 [(a)] (i) gifts, grants, devises, donations, and bequests of real property, personal
168 property, or services, from any source, or any other conveyance that may be made to the
169 account from private sources;
170 [(b)] (ii) interest and other earnings derived from the account money; and
171 [(c)] (iii) any additional amounts as appropriated by the Legislature.
172 (b) (i) For purposes of this subsection, the Affordable Care Act is as defined in Section
173 31A-2-212 .
174 (ii) If an insurer contributes to the Autism Treatment Account, for purposes of
175 calculating an insurer's medical loss ratio under the Affordable Care Act, the insurance
176 commissioner shall consider the contribution to the Autism Treatment Account as a claims
177 payment by the insurer.
178 (3) (a) Except as provided under Subsection (3)(b), the executive director of the
179 department shall be responsible for administering the account.
180 (b) The committee shall be responsible for the following actions in relation to the

181 account, consistent with the requirements of this title:
182 (i) prioritizing and allocating uses for account money, as permitted under Subsection
183 (4);
184 (ii) determining [what] which providers [or organizations] of services for the treatment
185 of autism spectrum disorder qualify for disbursements from the account for services rendered;
186 and
187 (iii) authorization of all other distributions from the account, except that disbursements
188 for expenses authorized under [Subsection] Subsections (6) and (7) shall also require the
189 approval of the executive director.
190 (4) Account money may be used to:
191 (a) assist with the cost of evaluating and treating [persons] a child between the age of
192 two and six years with an autism spectrum disorder; and
193 (b) provide [persons] a child between the age of two and six years with an autism
194 spectrum disorder with treatments that utilize [early intensive behavior therapy; and] applied
195 behavior analysis and other proven effective treatments included under Subsection
196 26-52-202 (4)(b)(ii).
197 [(c) provide grants to persons or organizations for providing the services described in
198 Subsection (4)(a) or (b).]
199 (5) An individual who receives services that are paid for from the account [or who
200 receives services through an organization or provider that receives payment from the account]
201 shall:
202 (a) be a resident of Utah;
203 (b) have been diagnosed by a qualified professional as having an autism spectrum
204 disorder;
205 (c) be [younger than eight] between the age of two and six years [of age]; and
206 (d) have a need that can be met within the requirements of this [title] chapter.
207 (6) All actual and necessary operating expenses for the committee and staff shall be
208 paid by the account.
209 (7) [Account] No more than 9% of the account money may [not] be used for
210 administrative or other expenses of the Department of Health [that are not normally provided
211 for by legislative appropriation].

212 (8) All interest and other earnings derived from the account money shall be deposited
213 into the account.
214 (9) The state treasurer shall invest the money in the account under Title 51, Chapter 7,
215 State Money Management Act.
216 Section 5. Section 26-52-202 is amended to read:
217 26-52-202. Autism Treatment Account Advisory Committee -- Membership --
218 Time limit.
219 (1) (a) There is created an Autism Treatment Account Advisory Committee consisting
220 of [five] six members appointed by the governor to two-year terms of office as follows:
221 (i) one person holding a doctorate degree who has experience in treating persons with
222 an autism spectrum disorder;
223 (ii) one person who is a Board Certified Behavior Analyst;
224 [(ii)] (iii) one person who is a physician licensed under Title 58, Chapter 67, Utah
225 Medical Practice Act, or Title 58, Chapter 68, Utah Osteopathic Medical Practice Act, who has
226 completed a residency program in pediatrics;
227 [(iii)] (iv) one person who is employed in the Department of Health; and
228 [(iv)] (v) two persons from the community who are familiar with autism spectrum
229 disorders and their effects, diagnosis, treatment, rehabilitation, and support needs, including:
230 (A) family members of a person with an autism spectrum disorder;
231 (B) representatives of an association which advocates for persons with an autism
232 spectrum disorder; and
233 (C) specialists or professionals who work with persons with autism spectrum disorders.
234 (b) Notwithstanding the requirements of Subsection (1)(a), the governor shall, at the
235 time of appointment or reappointment, adjust the length of terms to ensure that the terms of
236 committee members are staggered so that approximately half of the committee is appointed
237 every year.
238 (c) If a vacancy occurs in the committee membership for any reason, a replacement
239 may be appointed for the unexpired term.
240 (2) The department shall provide staff support to the committee.
241 (3) (a) The committee shall elect a chair from the membership on an annual basis.
242 (b) A majority of the committee constitutes a quorum at any meeting, and, if a quorum

243 exists, the action of the majority of members present shall be the action of the committee.
244 (c) The executive director may remove a committee member:
245 (i) if the member is unable or unwilling to carry out the member's assigned
246 responsibilities; or
247 (ii) for good cause.
248 (4) The committee may, in accordance with Title 63G, Chapter 3, Utah Administrative
249 Rulemaking Act, make rules governing the committee's activities, which rules shall:
250 (a) comply with the requirements of this title; and
251 (b) include:
252 (i) qualification criteria and procedures for selecting [service and treatment providers
253 that receive disbursements from the account, which criteria shall give additional consideration
254 to providers that are willing to use low interest loans when providing services to individuals;
255 and] children who may qualify for assistance from the account;
256 (ii) qualifications, criteria, and procedures for evaluating the services and providers to
257 include in the program, which shall include at least:
258 (A) applied behavior analysis provided by or supervised by a Board Certified Behavior
259 Analyst or a licensed psychologist with equivalent university training and supervised
260 experience;
261 (B) collaboration with existing tele-health networks to reach children in rural and
262 under-served areas of the state; and
263 (C) methods to engage family members in the treatment process; and
264 [(ii)] (iii) provisions to address and avoid conflicts of interest that may arise in relation
265 to[:] the committee's work.
266 [(A) the committee's selection of providers and persons that receive referrals,
267 disbursements, or assistance from the account; and]
268 [(B) other matters that may constitute a conflict of interest.]
269 (5) The committee shall meet as necessary to carry out its duties and shall meet upon a
270 call of the committee chair or a call of a majority of the committee members[, but no more than
271 four times per year].
272 (6) The committee shall comply with the procedures and requirements of:
273 (a) Title 52, Chapter 4, Open and Public Meetings Act; and

274 (b) Title 63G, Chapter 2, Government Records Access and Management Act.
275 (7) Committee members shall receive no compensation or per diem allowance for their
276 services.
277 (8) (a) Not later than November 30 of each year, the committee shall provide a written
278 report summarizing the activities of the committee to:
279 [(a)] (i) the executive director of the department;
280 [(b)] (ii) the Legislature's Health and Human Services Interim Committee; and
281 [(c)] (iii) the Legislature's Health and Human Services Appropriations Subcommittee.
282 (b) The report under Subsection (8)(a) shall include:
283 (i) the number of children diagnosed with autism spectrum disorder who are receiving
284 services under this chapter;
285 (ii) the types of services provided to children under this chapter; and
286 (iii) results of any evaluations on the effectiveness of treatments and services provided
287 under this chapter.
288 Section 6. Section 26-52-203 is enacted to read:
289 26-52-203. Administration of services for eligible individuals.
290 (1) (a) The department shall establish a mechanism to:
291 (i) identify the children who are eligible to receive services from the account in
292 accordance with the standards for eligibility established in rules adopted by the committee
293 under Subsection 26-52-202 (4); and
294 (ii) review and pay for services provided to a child under this chapter.
295 (b) The department may contract with another state agency or a private entity to assist
296 with the mechanism to identify eligible children, provide for services, and pay for services.
297 (2) The department, or the entity selected to assist the department under Subsection (1)
298 may negotiate with providers of the services that are eligible under this chapter to maximize
299 efficiencies and quality of services to children.
300 Section 7. Section 49-20-411 is enacted to read:
301 49-20-411. Autism Pilot Program.
302 (1) As used in this section:
303 (a) "Applied behavior analysis" means the design, implementation, and evaluation of
304 environmental modifications using behavioral stimuli and consequences to produce socially

305 significant improvement in human behavior, including the use of direct observation,
306 measurement, and functional analysis of the relationship between environment and behavior
307 that are:
308 (i) necessary to develop, maintain, or restore, to the maximum extent practicable, the
309 functioning of an individual; and
310 (ii) provided or supervised by a board certified behavior analyst or a licensed
311 psychologist with equivalent university training and supervised experience.
312 (b) "Autism spectrum disorder" means a pervasive developmental disorder, as defined
313 by the most recent edition of the Diagnostic and Statistical Manual on Mental Disorders,
314 including:
315 (i) autistic disorder;
316 (ii) asperger's disorder; and
317 (iii) a pervasive developmental disorder not otherwise specified.
318 (c) "Treatment of autism spectrum disorders" means any treatment generally accepted
319 by the medical community or the American Academy of Pediatrics as an effective treatment for
320 an individual with an autism spectrum disorder, including applied behavior analysis.
321 (2) (a) Beginning July 1, 2012 and ending July 1, 2014, the Public Employees' Benefit
322 and Insurance Program shall provide a pilot program for the treatment of autism spectrum
323 disorders in accordance with Subsection (2)(b) for up to 50 children who:
324 (i) are between the age of two and six years old by July 1, 2012;
325 (ii) enroll in the pilot program on or before July 1, 2012; and
326 (iii) have a parent who is a state employee and is enrolled in a health plan that was
327 offered under this chapter on or before January 1, 2012.
328 (b) The autism services provided in this pilot program shall include:
329 (i) diagnosis of autism spectrum disorder by a physician or qualified mental health
330 professional, and the development of a treatment plan;
331 (ii) applied behavior analysis provided by a certified behavior analyst or someone with
332 equivalent training for a child with an autism spectrum disorder; and
333 (iii) an annual maximum benefit of $30,000 for autism spectrum disorder treatments
334 with the following cost sharing from the parents of the child with autism spectrum disorder:
335 (A) the parents will pay the first $250 of expenses for autism treatments provided by

336 the pilot program;
337 (B) the pilot program will pay 80% of the cost of the treatment after the first $250, and
338 the parents will pay 20% of the cost of treatment; and
339 (C) the pilot program will pay a maximum of a $150 per day for treatment of autism
340 spectrum disorder under Subsection (1)(c).
341 (3) The autism pilot program is a limited pilot to study the efficacy of providing autism
342 treatment and is not a mandate for coverage of autism treatment within the health plans offered
343 by the Public Employees' Benefit and Insurance Program.
344 Section 8. Appropriation.
345 Under the terms and conditions of Title 63J, Chapter 1, Budgetary Procedures Act, the
346 following sums of money are appropriated from resources not otherwise appropriated, or
347 reduced from amounts previously appropriated, out of the funds or accounts indicated for the
348 fiscal year beginning July 1, 2011 and ending June 30, 2012. These are additions to any
349 amounts previously appropriated for fiscal year 2012.
350 To Department of Human Services - Child and Family Services
351 From General Fund, One-time

($1,500,000)

352 Schedule of Programs:
353 Service Delivery ($1,500,000)
354 To Department of Health - Medicaid Optional Services
355 From General Fund, One-time

$1,500,000

356 Schedule of Programs:
357 Other Optional Services $1,500,000
358 To Department of Health - Medicaid Optional Services
359 From General Fund, One-time

$3,000,000

360 Schedule of Programs:
361 Other Optional Services $3,000,000
362 The Legislature intends that the Department of Health use the appropriations of
363 $3,000,000 to provide services and treatment for children with autism spectrum disorder
364 between the age of two to six years within Medicaid.
365 Under the terms and conditions of Title 63J, Chapter 1, Budgetary Procedures Act, the
366 following sums of money are appropriated from resources not otherwise appropriated, or

367 reduced from amounts previously appropriated, out of the funds or accounts indicated for the
368 fiscal year beginning July 1, 2012 and ending June 30, 2013. These are additions to any
369 amounts previously appropriated for fiscal year 2013.
370 To General Fund Restricted - Autism Treatment Account
371 From General Fund, One-time

$1,000,000

372 Schedule of Programs:
373 General Fund Autism Restricted Account $1,000,000
374 To Department of Health - Family Health and Preparedness
375 From General Fund Restricted - Autism Treatment
376 Account, One-time

$1,000,000

377 Schedule of Programs:
378 Children with Special Health Care Needs $1,000,000
379 Under Section 63J-1-603 of the Utah Code, the Legislature intends that up to
380 $4,500,000 of appropriations provided for the Department of Health - Medicaid Optional
381 Services line item not lapse at the close of Fiscal Year 2012. The use of any nonlapsing funds
382 is limited to the autism waiver program to provide services and treatment for children with
383 autism spectrum disorder between the age of two to six years.
384 Under Section 63J-1-603 of the Utah Code, the Legislature intends that up to
385 $4,500,000 of appropriations provided for the Department of Health - Medicaid Optional
386 Services line item not lapse at the close of Fiscal Year 2013. The use of any nonlapsing funds
387 is limited to the autism waiver program to provide services and treatment for children with
388 autism spectrum disorder between the age of two to six years.
389 Under Section 63J-1-603 of the Utah Code, the Legislature intends that the cost of
390 services for the autism treatment pilot program in Section 49-20-411 shall be paid for from the
391 surplus in the public employees' state risk pool contingency reserve.