PRINTER'S NO. 2037
No. 1655 Session of 2001
INTRODUCED BY VANCE, MANDERINO, PHILLIPS, M. BAKER, BEBKO-JONES,
BELARDI, BENNINGHOFF, BROWNE, BUTKOVITZ, BUXTON, CALTAGIRONE,
CAPPELLI, CAWLEY, CLARK, L. I. COHEN, COLAFELLA, CORRIGAN,
CREIGHTON, CURRY, DALEY, DALLY, DeWEESE, DiGIROLAMO,
D. EVANS, J. EVANS, FAIRCHILD, FEESE, FICHTER, FLEAGLE,
FLICK, FORCIER, FRANKEL, FREEMAN, GABIG, GEIST, GEORGE,
GODSHALL, HALUSKA, HARHAI, HARPER, HASAY, HENNESSEY, HERMAN,
HERSHEY, JAMES, KAISER, KELLER, KENNEY, KIRKLAND, KREBS,
LEDERER, MACKERETH, MARKOSEK, MARSICO, McCALL, McGILL,
McILHATTAN, McNAUGHTON, MICHLOVIC, MICOZZIE, R. MILLER,
S. MILLER, MUNDY, MYERS, NAILOR, PALLONE, PETRARCA, PIPPY,
PISTELLA, RAYMOND, READSHAW, ROEBUCK, ROSS, RUBLEY,
SAMUELSON, SATHER, SAYLOR, SCHRODER, SCHULER, SCRIMENTI,
SEMMEL, SHANER, B. SMITH, STABACK, STEELMAN, STERN,
T. STEVENSON, TANGRETTI, E. Z. TAYLOR, J. TAYLOR, THOMAS,
TIGUE, TULLI, WALKO, WATSON, WILT, WOJNAROSKI, YOUNGBLOOD AND
BELFANTI, MAY 23, 2001
REFERRED TO COMMITTEE ON HEALTH AND HUMAN SERVICES, MAY 23, 2001
AN ACT
1 Establishing the family support services program for certain
2 families with persons with disabilities; providing for the
3 powers and duties of the Department of Public Welfare;
4 establishing a Statewide Family Support Advisory Council;
5 providing for regional advisory councils; and making an
6 appropriation.
7 The General Assembly finds and declares as follows:
8 (1) A growing number of families are searching for ways
9 to empower themselves to keep their family members with
10 disabilities in their homes and their communities.
11 (2) Many families experience exceptionally high
12 financial outlays and significant physical and emotional
1 challenges in meeting the special needs of persons with
2 disabilities.
3 (3) Family members who could be part of their family and
4 community have been forced to live in out-of-home placements,
5 often at public expense, due to the financial disincentives
6 to care for persons with a disability at home. The result is
7 a loss to both these families and to this Commonwealth as a
8 whole.
9 (4) Supporting these families to keep their family
10 members at home is efficient and cost effective and improves
11 quality of life.
12 (5) Most families do not have access to family-centered
13 and family-directed services to support them in keeping their
14 family together.
15 (6) There is a need for support for families of people
16 with disabilities which should:
17 (i) Support families' cultural identities.
18 (ii) Be family centered and family directed.
19 (iii) Be readily accessible and individualized to
20 meet family and individual needs.
21 (iv) Address all disabilities and prevent gaps in
22 services to families across this Commonwealth.
23 (v) Avoid duplication and use existing resources
24 efficiently, including those resources designed for the
25 nondisabled population as well as those resources that
26 are specialized for those with disabilities.
27 (7) This Commonwealth's categorical family support
28 services program for persons diagnosed with mental
29 retardation has been successful in making a positive
30 difference in the lives of families and keeping them
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1 together.
2 (8) This Commonwealth's Caregiver Program for families
3 with persons over 60 years of age has made significant
4 difference in helping families since its inception.
5 (9) It is the policy of this Commonwealth that a family
6 support services program should be carried out in a manner
7 that is consistent with the following principles:
8 (i) Family support must focus on the needs of the
9 entire family.
10 (ii) Families should be supported in determining
11 their own needs and in making their own decisions
12 concerning services.
13 (iii) Families should have the opportunity not only
14 to choose and direct the services provided to them but
15 also to offer advice and assistance on the development
16 and operation of the service system.
17 (iv) Family support should offer options that are
18 flexible and responsive to the unique and changing needs
19 and to the strengths and cultural values of individual
20 families.
21 (v) Families should be supported in their efforts to
22 promote the integration and inclusion of their family
23 member with a disability in all aspects of community
24 life.
25 (vi) The family support services program must be
26 easily accessible to families and maintain accountability
27 without creating unnecessary administrative burdens.
28 (vii) The family support services program should
29 enhance but not duplicate other service programs and
30 should utilize existing community resources, both those
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1 which are specialized and those which are used by the
2 general community.
3 (viii) Eligibility for the family support services
4 program should not be limited to certain disabilities but
5 should be open to all disabilities. This program is
6 designed to bridge the gaps in service eligibility that
7 are created by requirements for specific disabilities.
8 (ix) The family support system should be proactive
9 and not used solely to respond to crisis.
10 The General Assembly of the Commonwealth of Pennsylvania
11 hereby enacts as follows:
12 Section 1. Short title.
13 This act shall be known and may be cited as the Family
14 Support for Persons with Disabilities Act.
15 Section 2. Definitions.
16 The following words and phrases when used in this act shall
17 have the meanings given to them in this section unless the
18 context clearly indicates otherwise:
19 "Advisory council." The Statewide Family Support Advisory
20 Council.
21 "Culturally competent." Services, supports or other
22 assistance that are conducted or provided in a manner that:
23 (1) is responsive to the beliefs, interpersonal styles,
24 attitudes, language and behaviors of those individuals
25 receiving services; and
26 (2) has the greatest likelihood of ensuring
27 participation of those individuals.
28 "Department." The Department of Public Welfare of the
29 Commonwealth.
30 "Disability." A severe, chronic condition of an individual
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1 that:
2 (1) is attributable to a mental or physical impairment
3 or a combination of mental and physical impairments;
4 (2) is manifested before the individual attains age 22;
5 (3) is likely to continue indefinitely;
6 (4) results in substantial functional limitations in
7 three or more of the following areas of major life activity:
8 self-care, receptive and expressive language, learning,
9 mobility, self-direction, capacity for independent living,
10 economic self-sufficiency; and
11 (5) reflects the individual's need for a combination and
12 sequence of special, interdisciplinary or generic services,
13 individualized supports or other form of assistance that are
14 of lifelong or extended duration and are individually planned
15 and coordinated.
16 An individual from birth to age nine, inclusive, who has a
17 substantial developmental delay or specific congenital or
18 acquired condition may be considered to have a disability
19 without meeting three or more of the criteria described in the
20 definition of "disability" if the individual, without services
21 and supports, has a high probability of meeting those criteria
22 later in life.
23 "Family." A person with a disability and the people with
24 whom that person lives, including, but not limited to, a parent,
25 sibling, spouse, significant other, son or daughter,
26 grandparent, aunt, uncle, cousin, legal guardian or legal
27 custodian. The term also includes a person providing foster care
28 or a family-living program home. The term does not include
29 persons acting in their paid employment capacity who provide
30 services in hospitals, State centers, nursing homes, personal
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1 care boarding homes, domiciliary care, community living
2 arrangements or other such facilities.
3 "Family centered or family directed." The term refers to a
4 system in which families are empowered to identify their needs,
5 participate in the development of any service plan, determine
6 which services they want delivered and to select the service
7 provider in which the services respond to the needs of the
8 entire family in a timely and appropriate manner and are easily
9 accessible to and usable by the family.
10 "Family support." Supports, resources, services and other
11 assistance that are designed to support and are provided:
12 (1) To families in their efforts to maintain family
13 unity and keep persons with disabilities in the family home
14 and participating in their community.
15 (2) To prevent inappropriate and unwanted out-of-home
16 placement.
17 (3) When possible, reunite individuals with disabilities
18 who have been placed out of the home by their family.
19 The term includes voucher or reimbursement systems. For the
20 purpose of this definition, "services" include respite care in
21 and out of the home, recreation, assistive technology as defined
22 in section 3 of the Assistive Technology Act of 1988 (Public Law
23 105-394, 29 U.S.C. 3002), information and referral and other
24 services as authorized by the Department of Public Welfare.
25 "Regional advisory council." A regional family support
26 advisory council.
27 "Regional agency." An organization, either public or
28 private, selected by the Department of Public Welfare or its
29 Statewide contractor in consultation with the Statewide Family
30 Support Advisory Council to administer the family support
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1 program in a designated geographical area and that is selected
2 based on a demonstrated commitment to family control and other
3 principles set forth in this act.
4 Section 3. Powers and duties of department.
5 (a) General powers.--The department shall have the power and
6 its duty shall be to:
7 (1) Establish and develop a program of family supports
8 to eligible families.
9 (2) Establish working relationships, including
10 interagency agreements, with other governmental bodies and
11 public and private agencies as needed to fulfill the purposes
12 of this act.
13 (3) Within six months of the effective date of this act,
14 establish the Statewide Family Support Advisory Council.
15 (4) Select and contract with regional agencies to
16 administer family support services.
17 (5) With the assistance of the advisory council,
18 develop, within 18 months of the effective date of this act,
19 all program requirements and regulations necessary to fulfill
20 the purposes of this act, including, but not limited to,
21 those related to service utilization and quality assurance.
22 (6) Monitor compliance with its contracts and enforce
23 regulations and program requirements.
24 (7) Evaluate the program with the assistance of the
25 advisory council, including conducting consumer surveys and
26 analyses of families on waiting lists. Based on the
27 evaluation, the department shall prepare recommendations for
28 quality improvements and for ways to seek and leverage
29 additional State and other funding to meet the need.
30 (8) The department shall require information from the
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1 regional agencies with which it contracts and shall review
2 the information with the advisory council. The information
3 shall include, but not be limited to, the annual client and
4 budget estimates.
5 (9) With the assistance of the advisory council, develop
6 allocation formulas and allocation guidelines for the
7 regions.
8 (10) Allocate available funds among the regions.
9 (11) With the assistance of the advisory council,
10 establish a grievance procedure which provides for initial
11 review on the regional level and appeal to the State level.
12 (12) With the assistance of the advisory council,
13 develop a process for the authorization of additional
14 services.
15 (b) Power to contract.--The department may contract with a
16 Statewide disability-related organization to carry out the
17 provisions of this act.
18 Section 4. Powers and duties of regional agencies.
19 The regional agencies shall have the power and duty to:
20 (1) Review applications from families seeking support
21 services and make eligibility determinations.
22 (2) Approve service plans.
23 (3) Based on departmental guidelines, allocate funds to
24 eligible families.
25 (4) Develop and monitor reporting mechanisms for
26 eligible families. Reports shall be designed to ensure
27 accountability and to minimize the burden on families.
28 (5) Establish a regional family support advisory support
29 council.
30 (6) Provide outreach, information and referral,
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1 including assisting families to locate and secure support
2 services from other sources for which they may be eligible.
3 (7) Submit documentation of need to the department.
4 Section 5. Family support services program.
5 (a) Eligibility.--Families residing in this Commonwealth
6 that include at least one person under 22 years of age with a
7 disability shall be eligible for family support services under
8 this act.
9 (b) Types of services.--The types of services and supports
10 to be provided and the organization or individual to provide
11 them shall be selected, consistent with the intent of this act,
12 by the family and shall be approved by the department or the
13 regional agencies. Regional agencies may use family support
14 funds to contract directly with providers for necessary services
15 only when the arrangement will facilitate rather than limit
16 family choice. The supports or services which are selected may
17 benefit the family as a whole.
18 (c) Control.--When the person with the disability attains 18
19 years of age, that person shall make the decision regarding
20 services unless the person is adjudicated incapacitated. When
21 the person with the disability is under 18 years of age, the
22 decision making for services must be shared by appropriate
23 family members, including the person with the disability to the
24 extent of the person's capacity.
25 (d) Payment.--Families shall have choice of payment method,
26 including, but not limited to, timely reimbursement and
27 vouchers. In determining the amount of support to be provided,
28 the regional agencies shall consider income, family composition,
29 number of persons with disabilities, the related costs of the
30 disability to the family, other sources of support which are
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1 available and the costs of the service being requested from this
2 program. Families shall be accountable for payments received and
3 shall complete all reports required by the regional agencies.
4 Section 6. Interagency coordination.
5 (a) Nonduplication.--The family support system provided for
6 in this act shall be separate from the Office of Mental
7 Retardation Family Resource Service. The family support services
8 system shall serve individuals with the full range of
9 disabilities, including mental retardation, but may not pay for
10 services for which funds are available to the family from some
11 other source such as the Office of Mental Retardation Program.
12 (b) Coordination.--The family support services program shall
13 coordinate and when necessary establish interagency agreements
14 with other related public and private programs. These programs
15 include, but are not limited to, those of the Department of
16 Aging, the Department of Education, the Department of Health,
17 the Department of Labor and Industry and the Department of
18 Public Welfare.
19 Section 7. Advisory councils.
20 (a) Advisory council.--
21 (1) The department shall establish a Statewide advisory
22 council for the purpose of advising the department on all
23 matters pertaining to the delivery of family support
24 services. The duties of the advisory council shall include,
25 but not be limited to, assisting in the development of
26 program requirements and regulations and of criteria for
27 selection of regional agencies and participating in the
28 evaluation process, including the development of consumer
29 surveys.
30 (2) A majority of membership shall include persons with
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1 disabilities and family members of persons with disabilities.
2 Every effort shall be made to include recipients of family
3 support services. Membership shall also include
4 representatives from regional advisory councils and Statewide
5 advocacy organizations. Every effort shall be made to reflect
6 the diversity of disabilities within this Commonwealth.
7 (3) Family members and persons with disabilities who are
8 members of the advisory council may be reimbursed for
9 reasonable expenses incurred in the performance of their
10 duties.
11 (b) Regional advisory councils.--
12 (1) Each regional agency shall establish a regional
13 advisory council for the purpose of advising the agency on
14 all matters pertaining to the delivery of family support
15 services, including, but not limited to, the development of
16 payment policies.
17 (2) A majority of the membership of each regional
18 advisory council shall include persons with disabilities and
19 family members of persons with disabilities. Every effort
20 shall be made to include recipients of family support
21 services. Membership shall also include representatives from
22 local advocacy organizations. Every effort shall be made to
23 reflect the diversity of disabilities within the region.
24 (3) Family members and persons with disabilities who are
25 members of the regional advisory council may be reimbursed
26 for reasonable expenses incurred in the performance of their
27 duties.
28 Section 8. Funding.
29 (a) General rule.--Nothing in this act shall be construed as
30 providing any individual with an entitlement to services or
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1 benefits. Services under this act shall be made available across
2 this Commonwealth and only to the extent of the availability and
3 level of appropriations made by the General Assembly.
4 (b) Nonsupplantation.--The funding authorized by this act
5 shall not be used to displace benefits, entitlements or
6 resources available under other programs.
7 (c) Payer of last resort.--Family support funds shall be
8 used only when other funds are not available to pay for the same
9 services or supports.
10 (d) Priority.--When available funds are insufficient to meet
11 the need, priority shall be given to families which are not
12 currently receiving support services from another source.
13 (e) Administrative costs.--Allowable administrative costs
14 shall be determined by the department in conjunction with the
15 advisory council.
16 (f) State tax.--Not withstanding any other provision of the
17 law to the contrary, funds paid under this act shall not be
18 counted as income for purposes of State income tax.
19 (g) Agreements with other taxing authorities and benefit-
20 issuing agencies.--The department shall seek agreements with
21 other taxing authorities and benefit-issuing agencies so that
22 payments made under this act shall not be reportable as income
23 to the family.
24 (h) Intrastate travel.--When a family moves from one region
25 of this Commonwealth to another, the region of origin shall be
26 responsible for the remainder of the funds allocated.
27 Section 9. Appropriation.
28 The sum of $2,500,000, or as much thereof as may be
29 necessary, is hereby appropriated to the Department of Public
30 Welfare to carry out the provisions of this act.
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1 Section 10. Effective date.
2 This act shall take effect in 60 days.
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