CORRECTIVE REPRINT
PRIOR PRINTER'S NO. 1927 PRINTER'S NO. 2171
No. 1583 Session of 1999
INTRODUCED BY VANCE, JUNE 8, 1999
REFERRED TO COMMITTEE ON HEALTH AND HUMAN SERVICES, JUNE 8, 1999
AN ACT
1 Establishing the family support services program for certain
2 families with disabled persons; providing for the powers and
3 duties of the Department of Public Welfare; establishing a
4 Statewide family support advisory council; providing for
5 regional advisory councils; and making an appropriation.
6 The General Assembly finds and declares as follows:
7 (1) A growing number of families are searching for ways
8 to empower themselves to keep their family members with
9 disabilities in their homes and their communities.
10 (2) Many families experience exceptionally high
11 financial outlays and significant physical and emotional
12 challenges in meeting the special needs of persons with
13 disabilities.
14 (3) Family members who could be part of their family and
15 community have been forced to live in out-of-home placements,
16 often at public expense, due to the financial disincentives
17 to care for persons with a disability at home. The result is
18 a loss to both these families and to the Commonwealth as a
19 whole.
1 (4) Supporting these families to keep their family
2 members at home is efficient and cost-effective and improves
3 quality of life.
4 (5) Most families do not have access to family-centered
5 and family-directed services to support them in keeping their
6 family together.
7 (6) There is a need for a comprehensive system of
8 support for families of people with disabilities which
9 should:
10 (i) Support families' cultural identities.
11 (ii) Be family-centered and family-directed.
12 (iii) Be readily accessible and individualized to
13 meet family and individual needs.
14 (iv) Address all disabilities and prevent gaps in
15 services to families across this Commonwealth.
16 (v) Avoid duplication and use existing resources
17 efficiently, including those resources designed for the
18 nondisabled population as well as those that are
19 specialized for those with disabilities.
20 (7) Pennsylvania's categorical family support services
21 program for persons diagnosed with mental retardation has
22 been successful in making a positive difference in the lives
23 of families and keeping them together.
24 (8) Pennsylvania's Caregiver Program for families with
25 persons over 60 years of age has made a significant
26 difference in helping families since its inception.
27 It is the policy of the Commonwealth that a family support
28 services program should be carried out in a manner that is
29 consistent with the following principles:
30 (1) Family support must focus on the needs of the entire
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1 family.
2 (2) Families should be supported in determining their
3 own needs and in making their own decisions concerning
4 services.
5 (3) Families should have the opportunity not only to
6 choose and direct the services provided to them, but also to
7 direct the development and operation of the service system.
8 (4) Family support should offer options that are
9 flexible and responsive to the unique and changing needs and
10 to the strengths and cultural values of individual families.
11 (5) Families should be supported in their efforts to
12 promote the integration and inclusion of their family member
13 with a disability in all aspects of community life.
14 (6) The family support services program must be easily
15 accessible to families and maintain accountability without
16 creating unnecessary administrative burdens.
17 (7) The family support services program should enhance,
18 but not duplicate, other service programs and should utilize
19 existing community resources, both those which are
20 specialized and those which are used by the general
21 community.
22 (8) Eligibility for the family support services program
23 should not be limited to certain disabilities, but should be
24 open to all disabilities. This program is designed to bridge
25 the gaps in service eligibility that are created by
26 requirements for specific disabilities.
27 (9) The family support services system should be
28 proactive and not used solely to respond to crisis.
29 The General Assembly of the Commonwealth of Pennsylvania
30 hereby enacts as follows:
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1 Section 1. Short title.
2 This act shall be known and may be cited as the Family
3 Support for Persons with Disabilities Act.
4 Section 2. Definitions.
5 The following words and phrases when used in this act shall
6 have the meanings given to them in this section unless the
7 context clearly indicates otherwise:
8 "Advisory council." The Statewide Family Support Advisory
9 Council.
10 "Culturally competent." This term refers to services,
11 supports or other assistance that are conducted or provided in a
12 manner that:
13 (1) are responsive to the beliefs, interpersonal styles,
14 attitudes, language and behaviors of those individuals
15 receiving services; and
16 (2) have the greatest likelihood of ensuring
17 participation of those individuals.
18 "Department." The Department of Public Welfare of the
19 Commonwealth.
20 "Disability." A chronic condition of an individual five
21 years of age or older that:
22 (1) is attributable to a mental or physical impairment
23 or a combination of mental and physical impairments;
24 (2) is likely to continue indefinitely;
25 (3) results in substantial functional limitations in
26 three or more of the following areas of major life activity:
27 self-care, receptive and expressive language, learning,
28 mobility, self-direction, capacity for independent living,
29 economic self-sufficiency; and
30 (4) reflects the individual's need for a combination and
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1 sequence of special, interdisciplinary or generic services,
2 supports or other assistance that is of lifelong or extended
3 duration and individually planned and coordinated.
4 Except that such term, when applied to infants and young
5 children means individuals from birth to age five who have
6 substantial developmental delay or specific congenital or
7 acquired conditions with a high probability of resulting in
8 disabilities if services are not provided.
9 "Family." A person with a disability and the people with
10 whom that person lives, including, but not limited to, a parent,
11 sibling, spouse, significant other, son or daughter,
12 grandparent, aunt, uncle, cousin, legal guardian or legal
13 custodian. The term also includes a person providing foster care
14 or a family-living program home. The term does not include
15 persons acting in their paid employment capacity who provide
16 services in hospitals, state centers, nursing homes, personal
17 care boarding homes, domiciliary care, community-living
18 arrangements or other such facilities.
19 "Family-centered" or family-directed." The term refers to a
20 system in which families are empowered to identify their needs,
21 participate in the development of any service plan, determine
22 which services they want delivered and select the service
23 provider, in which the services respond to the needs of the
24 entire family in a timely and appropriate manner and are easily
25 accessible to and usable by the family.
26 "Family support." Supports, resources, services and other
27 assistance that are designed to support and are provided:
28 (1) To families in their efforts to maintain family
29 unity and keep persons with disabilities in the family home
30 and participating in their community.
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1 (2) To Prevent inappropriate and unwanted out-of-home
2 placement.
3 (3) When possible, to reunite individuals with
4 disabilities who have been placed out of the home with their
5 family.
6 The term includes cash subsidies, voucher or reimbursement
7 systems. For purposes of this definition, "services" include,
8 but are not limited to: respite care in and out of the home,
9 homemaker services, family training and education, special
10 diets, behavioral supports, vehicle modification, minor home
11 rehabilitation or modification, family aide, recreation,
12 assistive technology, special evaluation and diagnosis,
13 including specialized therapies such as physical, occupational
14 and speech therapy, transportation, uncovered medical, dental or
15 eye care needs, attendant care, training in independent living
16 skills and other assistance and supports.
17 "Regional agency." An organization, either public or
18 private, selected by the Department of Public Welfare or its
19 Statewide contractor in consultation with the Statewide Family
20 Support Advisory Council to administer the family support
21 program in a designated geographical area and that is selected
22 based on a demonstrated commitment to family control and other
23 principles set forth in this act.
24 "Regional advisory council." A regional family support
25 advisory council.
26 Section 3. Powers and duties of department.
27 (a) General powers.--The department shall have the power and
28 its duty shall be to:
29 (1) Establish and develop a program of family supports
30 to eligible families.
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1 (2) Establish working relationships, including
2 interagency agreements, with other governmental bodies and
3 public and private agencies as needed to fulfill the purposes
4 of this act.
5 (3) Within 90 days of the effective date of this act,
6 establish the Statewide Family Support Advisory Council.
7 (4) Select and contract with regional agencies to
8 administer family support services.
9 (5) With the assistance of the advisory council,
10 develop, within one year of the effective date of this act,
11 all program requirements and regulations necessary to fulfill
12 the purposes of this act.
13 (6) Monitor compliance with its contracts and enforce
14 regulations and program requirements.
15 (7) Evaluate the program with the assistance of the
16 advisory council, including conducting of consumer surveys
17 and analysis of families on waiting lists. Based on the
18 evaluation, the department shall prepare recommendations for
19 quality improvements and for ways to seek and leverage
20 additional State and other funding to meet the need.
21 (8) By November 1 of each year, for the fiscal year
22 beginning with July 1 of the following year, submit
23 documentation of need to the Governor. With the submission of
24 the General Fund budget, the Governor shall submit the
25 documentation submitted by each of the regions to the
26 chairman and minority chairman of the Appropriations
27 Committee of the Senate and the chairman and minority
28 chairman of the Appropriations Committee of the House of
29 Representatives. The department shall request information
30 from the regional agencies with which it contracts and shall
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1 review the information with the advisory council. The
2 information shall include the annual client and budget
3 estimates, including, but not limited to, the number of
4 families on waiting lists.
5 (9) With the assistance of the advisory council,
6 allocate available funds consistent with the needs-based
7 process among the regions.
8 (10) With the assistance of the advisory council,
9 establish a grievance procedure which provides for initial
10 review on the regional level and appeal to the State level.
11 (b) Power to contract.--The department may contract with a
12 Statewide disability-related organization to carry out this act.
13 Section 4. Powers and duties of regional agencies.
14 Regional agencies shall have the power and duty to:
15 (1) Receive applications from families seeking support
16 services.
17 (2) Allocate funds to eligible families.
18 (3) Develop and monitor reporting mechanisms to ensure
19 accountability by eligible families. Reports shall be
20 designed to minimize the burden on families.
21 (4) Establish a regional family support advisory
22 council.
23 (5) Provide outreach, information and referral.
24 (6) Implement the grievance procedure established in
25 section 3(a)(10).
26 (7) Submit documentation of need to the department as
27 required by section 3(a)(8).
28 Section 5. Family support services program.
29 (a) Eligibility.--Families residing in this Commonwealth
30 that include at least one person under 22 years of age with a
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1 disability shall be eligible for family support services under
2 this act. Families which are eligible but unable to receive
3 services because of lack of availability of funds shall be
4 placed on a waiting list.
5 (b) Types of services.--The types of services and supports
6 to be provided and the organization or individual to provide
7 them shall be selected, consistent with the intent of this act,
8 by the family and may not be prescribed by the department or the
9 regional agencies. Regional agencies may use family support
10 funds to contract directly with providers for necessary services
11 only when the arrangement will facilitate rather than limit
12 family choice. The supports or services which are selected may
13 benefit the family as a whole.
14 (c) Control.--When the person with the disability attains 18
15 years of age, the person shall make the decision regarding
16 services unless the person is adjudicated incapacitated. When
17 the person with the disability is under 18 years of age the
18 decision making for services must be shared by appropriate
19 family members, including the person with the disability to the
20 extent of the person's capacity.
21 (d) Payment.--Families shall have choice of payment method,
22 including, but not limited to, cash advances, timely cash
23 reimbursement and vouchers. In determining the amount of support
24 to be provided, the regional agencies shall consider income,
25 family composition, number of persons with disabilities, the
26 related costs to the family of the disability and the costs of
27 the service being requested from this program. Families shall be
28 accountable for payments received and shall complete all reports
29 required by the regional agencies.
30 Section 6. Interagency coordination.
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1 (a) Nonduplication.--The family support services system
2 provided for in this act shall be separate from the Office of
3 Mental Retardation Family Resource Service. The family support
4 services system shall serve individuals with the full range of
5 disabilities, including mental retardation, but may not pay for
6 services for which funds are available to the family from some
7 other source such as the Office of Mental Retardation Program.
8 (b) Coordination.--The family support services program shall
9 coordinate and when necessary establish interagency agreements
10 with other related public and private programs. These programs
11 shall include, but are not limited to, those of the Department
12 of Aging, Department of Education, Department of Health,
13 Department of Labor and Industry and Department of Public
14 Welfare.
15 Section 7. Advisory councils.
16 (a) Advisory council.--
17 (1) The department shall establish a Statewide advisory
18 council for the purpose of advising the department on all
19 matters pertaining to the delivery of family support
20 services. The duties of the advisory council shall include,
21 but not be limited to, assisting in the development of
22 program requirements and regulations and of criteria for
23 selection of regional agencies and participating in the
24 evaluation process, including the development of consumer
25 surveys.
26 (2) The membership of the advisory council shall include
27 a majority of family members of persons with disabilities and
28 persons with disabilities. Every effort shall be made to
29 include recipients of family support services. Membership
30 shall also include representatives from regional advisory
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1 councils and Statewide advocacy organizations. Every effort
2 shall be made to reflect the diversity of disabilities within
3 this Commonwealth.
4 (3) Family members and persons with disabilities who are
5 members of the advisory council may be reimbursed for
6 reasonable expenses incurred in the performance of their
7 duties.
8 (b) Regional advisory councils.--
9 (1) Each regional agency shall establish a regional
10 advisory council for the purpose of advising the agency on
11 all matters pertaining to the delivery of family support
12 services, including, but not limited to, the development of
13 payment policies.
14 (2) The membership of each regional advisory council
15 shall include a majority of family members of persons with
16 disabilities and persons with disabilities. Every effort
17 shall be made to include recipients of family support
18 services. Membership shall also include representatives from
19 local agency organizations. Every effort shall be made to
20 reflect the diversity of disabilities within the region.
21 (3) Family members and persons with disabilities who are
22 members of the regional advisory council may be reimbursed
23 for reasonable expenses incurred in the performance of their
24 duties.
25 Section 8. Funding.
26 (a) General rule.--Nothing in this act shall be construed as
27 providing any individual with an entitlement to services or
28 benefits. Services under this act shall be made available across
29 this Commonwealth and only to the extent of the availability and
30 level of appropriations made by the General Assembly.
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1 (b) Nonsupplantation.--The funding authorized by this act
2 shall not be used to displace benefits, entitlements or
3 resources available under other programs.
4 (c) Payer of last resort.--Family support funds shall be
5 used only when other funds are not available to pay for the same
6 services or supports.
7 (d) Administrative costs.--Allowable administrative costs
8 shall be determined by the department in conjunction with the
9 advisory council.
10 (e) State tax.--Notwithstanding any other provision of law
11 to the contrary, funds paid under this act shall not be deemed
12 as income for purposes of State income tax.
13 (f) Agreements with other taxing authorities and benefits-
14 issuing agencies.--The department shall seek agreements with
15 other taxing authorities and benefit-issuing agencies so that
16 payments made under this act shall not be reportable as income
17 to the family.
18 (g) Intrastate travel.--When a family moves from one region
19 of this Commonwealth to another, the region of origin shall be
20 responsible for the remainder of the funds allocated.
21 Section 9. Appropriation.
22 The sum of $7,201,584, or as much thereof as may be
23 necessary, is hereby appropriated to the Department of Public
24 Welfare to carry out the provisions of this act.
25 Section 10. Effective date.
26 This act shall take effect in 60 days.
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