PURPOSE: This rule defines terms, establishes eligibility criteria and sets out procedures for providing cash stipends to families, enabling the families’ children with developmental disabilities to continue to live in their family homes and remain integrated within their communities.

1. (1) Through this rule, the Division of Mental Retardation and Developmental Disabilities (division) intends to provide a support to eligible families of children with developmental disabilities by implementing a cash stipend program to be directed and monitored by regional family support councils. Specifically, through its regional centers, the division will—

   1. (A) Develop regional family support plans with direction and assistance from regional family support councils;
   2. (B) Make families of children with developmental disabilities aware of the family support stipend program;
   3. (C) Determine applicant children’s eligibility for services from the division; and
   4. (D) Forward applications for stipends to family support councils.

2. (2) Terms defined in sections 630.005 and 633.005, RSMo are incorporated by reference for use in this rule. As used in this rule, unless the context clearly indicates otherwise, the following terms also mean:

   1. (A) Child—A person under age eighteen

3. (18) with a developmental disability;

   1. (B) Developmental disability—A disability which—

      1. 1. Is attributable to:

         1. A. Mental retardation, cerebral palsy,

epilepsy, head injury or autism, or a learning disability related to a brain dysfunction; or

1. B. Any other mental or physical

impairment, or a combination of mental and physical impairments;

1. 2. Is manifested before the person

attains age twenty-two (22);

1. 3. Is likely to continue indefinitely;
2. 4. Results in substantial functional limi-

tations in two (2) or more of the following areas of major life activities: self-care, receptive and expressive language development and use, learning, self-direction, capacity for independent living or economic self-sufficiency, and mobility; and

1. 5. Reflects the person’s need for a com-

bination and sequence of special, interdisciplinary or generic care, habilitation or other services that may be of lifelong or extended duration and are individually planned and coordinated;

1. (C) Eligible annual income—Adjusted gross income shown on the family’s most recent federal income tax return, less all expenses related to the disability of the child (including insurance expense and medical expense and expense related to therapies and equipment purchases if those expenses are not covered by insurance) and less all other nonreimbursed family medical expenses, that total not to exceed sixty thousand dollars ($60,000). Because families of children with developmental disabilities often incur more expenses than other families, benefits based on need shall not be considered income, for example, Supplemental Security Income; Medicaid; Medicare; Aid to Families with Dependent Children; General Relief; food stamps; Women, Infants and Children program benefits and adoption subsidies;
2. (D) Family or private caregiver (family)— The person(s) with whom the child resides or who is primarily responsible for the physical care, education, health and nurturing of the child. The term includes biological or adoptive parents, siblings, extended blood relatives or other persons to whom legal custody of the child has been granted by a court. The term also includes these persons, irrespective of whether their children are living. The term does not include persons providing care through foster home placement, hospitals, habilitation centers, nursing homes, group homes or other institutions;

3. (E) Family support—Services and helping relationships for the purpose of maintaining and enhancing family caregiving. Family support may be one (1) or more services that enable children to reside within their family homes and remain integrated within their communities and are—

   1. 1. Based on individual and family

needs;

1. 2. Identified by the family;
2. 3. Easily accessible for the family;
3. 4. Flexible and varied to meet the ever

changing needs of family members;

1. 5. Provided in a timely manner; and
2. 6. Family-centered and culturally sensi-

tive;

1. (F) Family support council—A subcommittee of a regional advisory council with duties as set out in subsection (4)(D) of this rule and in 9 CSR 45-4.040;
2. (G) Family support program—A coordinated system of flexible family support services that enhance family care giving, strengthen family functioning, reduce family stress, foster community integration, promote individual and family independence and encourage economic self-sufficiency, all to help children remain with their families. The stipend program differs from the division’s Choices for 9 CSR 45-4

Families voucher program because vouchers are issued for specific client-based needs, but stipends provide assistance to family members as well as the child, enabling the child to continue to live at home;

1. (H) Fiscal year—A twelve (12)-month period from July 1 through June 30 for which funds are appropriated by the Missouri General Assembly for operation of state government; and
2. (I) Monitoring—Activities of the family support council as set out in section (16).

1. (3) The division shall conduct training, education and outreach on the stipend program. It shall—-

   1. (A) Develop a training curriculum and provide comprehensive initial and ongoing training for regional center personnel and family support councils;
   2. (B) Develop brochures about the program to be distributed by regional centers to agencies and organizations serving persons with developmental disabilities, to families and to others who may inquire;
   3. (C) Conduct public meetings, provide speakers, provide technical assistance and otherwise take steps to ensure public knowledge about the program; and
   4. (D) Develop jointly with the Missouri Planning Council for Developmental Disabilities a handbook for use by family support councils.

2. (4) Each regional advisory council chairperson shall appoint a regional family support council.

   1. (A) The family support council shall be composed of seven (7) members, all of whom shall be family members. In this subsection only, family members include those persons defined in subsection (2)(D) except that as many as three (3) members of the council may be family members of persons who do not live in the family home. At least two (2) members shall also be members of the regional advisory council, and at least three

3. (3) members shall be family members of children. The members shall represent a variety of disabilities and the cultural diversity of the region. Members shall serve staggered two (2)-year terms. This is the same council as set out in 9 CSR 45-4.040.

   1. (B) Members shall be reimbursed for reasonable and necessary expenses incurred in the performance of their duties, including travel expenses. During the first year of the program, the reimbursement shall be paid from funds available to the division under the federal Developmental Disabilities Assistance and Bill of Rights Act of 1990 (Public Law 101-496) and from funds appropriated for the program. In subsequent years, reimbursement shall be paid only from funds appropriated for the program. Department travel regulations shall serve as a guideline to the councils.
   2. (C) Family support councils shall elect chairpersons and other officers as necessary. They shall meet at the call of their chairpersons except that for the first three (3) months after the councils are established, they shall meet monthly to acquaint themselves with their responsibilities and to establish bylaws, rules and procedures for carrying out those responsibilities.
   3. (D) In addition to those set out in section 633.050, RSMo, duties of each family support council shall include, but not be limited to, establishing timelines for making applications for stipends and conducting an annual evaluation of the effectiveness of its stipend program.
4. (5) Regional centers, regional advisory councils and family support councils shall jointly take steps each year to inform families of availability of stipends and of timelines and procedures for making applications.

5. (6) A family with an eligible annual income and that has one (1) or more children with developmental disabilities residing in the home shall be eligible to apply for a stipend for each child. No stipend shall exceed the maximum monthly federal Supplemental Security Income payment for an individual with a developmental disability who lives alone. Stipends shall be considered benefits and not income to the families. Stipends shall be used to purchase goods and services to help families provide for children with developmental disabilities. Goods and services include, but are not limited to—

   1. 1. Respite care;
   2. 2. Personal and attendant care;
   3. 3. Architectural and vehicular modifica-

tions;

1. 4. Healthand mental health-related

costs not otherwise covered;

1. 5. Equipment and supplies;
2. 6. Specialized nutrition and clothing;
3. 7. Homemaker services;
4. 8. Transportation;
5. 9. Integrated community activities;
6. 10. Training and technical assistance;

and

1. 11. Individual, family and group coun-

seling.

1. (7) The division shall not deny, reduce or terminate services to a family solely because the family has received a stipend.
2. (8) If a stipend recipient moves to another region from the region in which s/he lived at the time s/he received the stipend, the recipient shall continue to receive the original stipend only for the duration of that stipend. Thereafter, the family may make application for a stipend from the family support council in its region of residence.

3. (9) A stipend shall terminate—

   1. (A) When the child reaches age eighteen (18);
   2. (B) When the family moves from Missouri;
   3. (C) At the end of its original term, even if the child dies during the term of the stipend;
   4. (D) When the child moves permanently from the family home; or
   5. (E) When the family provides written notice that it no longer wishes to receive the stipend.
4. (10) If the status of the family changes during the duration of a stipend, for example, due to death or divorce, the newly responsible family member shall apply to the family support council to continue the stipend for its duration. The family support council shall provide written approval for the continuation.

5. (11) From available funds appropriated for the family support stipend program, the division shall make an annual allocation to each regional center for use by the center’s family support council in providing stipends to eligible families.

   1. (A) Allocations shall be made according to the following formula:

      1. 1. One-third (1/3) of the division’s

appropriation shall be allocated equally among the eleven (11) councils;

1. 2. One-third (1/3) of the appropriation

shall be allocated among the eleven (11) councils, based upon the estimated number of children with developmental disabilities living within each council’s region, using the most current statistics available on July 1 each year; and

1. 3. One-third (1/3) of the appropriation

shall be allocated among the councils, based upon the number of children receiving division services who live within each council’s region, using the most current statistics available on July 1 each year.

1. (B) The division shall make an allocation to each family support council by August 1 each year. If appropriations are from earned federal funds, pro rata allocations shall be made on the basis of estimated earnings. Any council that has unencumbered funds on March 31 each year shall inform the division in writing on that date of the amount of those funds, and the division shall reallocate the and Development Disabilities

funds among other councils requesting additional funds. As feasible, the reallocation shall be based upon the formula set out in subsection (11)(A). The division shall make the reallocation by April 15 each year.

1. (12) The procedure under which a family pursues a stipend is as follows:

   1. (A) The family contacts the regional center, which determines the child’s eligibility for division services;

   2. (B) If the child is eligible, the center assigns a case manager within three (3) working days. As expeditiously as possible, the center shall determine if other resources are available to meet the child’s service needs. If the center determines it cannot provide funding for the requested services, it shall immediately provide the family an application for a stipend and a stamped, addressed envelope for mailing the completed application to the family support council. The center shall also offer assistance in completing the application. The application shall include, but not be limited to—

      1. 1. The child’s name and the names of all

other persons in the family who would benefit from supports and services to be available through the stipend;

1. 2. The amount requested as a stipend

and the reasons for that need;

1. 3. The family’s computation of its eligi-

ble annual income; and

1. 4. A statement as to whether the family

is receiving a stipend or has ever received one;

1. (C) Within thirty (30) working days after receiving an application, the family support council shall determine the family’s income eligibility for a stipend;
2. (D) If the family is found eligible and if sufficient funds are available, the family support council may provide a stipend. If a family support council provides a stipend, it shall, within five (5) working days, provide written notice to the family. The notice shall include the amount and duration of the stipend as well as instructions on how to obtain the funds from the regional center. The notice shall be copied to the center;
3. (E) The regional center shall make monthly stipend payments to the family, the first payment within thirty (30) days after the date the center received notice of the stipend. In no case shall a stipend be provided for more than twelve (12) months. Families may receive stipends in subsequent years if they remain eligible and apply each year;
4. (F) Eligibility for a stipend does not automatically entitle a family to a stipend. Depending upon availability of funds, the family support council may have a waiting list for stipends for the remainder of that fiscal year and may establish priorities among families on the waiting list. All family support council waiting lists shall become invalid at the end of each fiscal year, and councils shall inform families on those waiting lists that they must reapply during the next fiscal year if they continue to seek stipends;
5. (G) If a family is found ineligible for a stipend or is found eligible and placed on a waiting list, the family support council shall, within five (5) working days, provide written notice to the family of its status and of its right to appeal the decision. The notice shall be copied to the regional center. The family support council may also refer the family to the regional center for services or other assistance; and

6. (H) Decisions on stipends shall only be made by family support councils, except that those decisions may be appealed under the following procedure:

   1. 1. Within ten (10) days after receiving

the family support council’s decision, the family shall notify the regional advisory council in writing of its desire to appeal the decision;

1. 2. Within thirty (30) working days after

receiving the family’s notice of desire to appeal, the regional advisory council shall conduct a private hearing with the family. The regional council shall—

1. A. Determine whether the family sup-

port council followed its procedures and guidelines; and

1. B. Review the family support coun-

cil’s decision;

1. 3. Within five (5) working days after its

hearing, the regional advisory council shall notify the family of its decision by registered mail, return receipt requested, and if the decision of the family support council is sustained, of the family’s right to appeal at the final level. If the regional advisory council overturns the decision of the family support council, the regional advisory council shall direct action to be taken by the family support council, as a remedy for the family;

1. 4. If the family desires to further appeal,

within ten (10) days after receiving the decision of the regional advisory council, the family shall notify the chairperson of the Missouri Planning Council for Developmental Disabilities in writing of the family’s desire to appeal at the final level;

1. 5. Within thirty (30) working days after

receiving the family’s notice of desire to appeal at the final level, the chairperson of the Missouri Planning Council for Developmental Disabilities shall convene a three (3)- member panel to conduct a private hearing with the family. The panel shall be composed 9 CSR 45-4

of one (1) member each from three (3) fami- AUTHORITY: section 633.190, RSMo 1994.* ly support councils other than the council This rule was originally filed as 9 CSR 70- whose decision is being appealed. The panel 1.010. Original rule filed April 4, 1994, shall review the decisions of the family supeffective Oct. 30, 1994. Amended: Filed May port council and regional advisory council; 25, 1995, effective Dec. 30, 1995. and *Original authority: 633.190, RSMo 1993.

1. 6. Within five (5) working days after its

hearing, the panel shall notify the family of its decision by registered mail, return receipt requested. If the panel overturns the decision of the regional advisory council, the panel shall direct action to be taken by the family support council as a remedy for the family. The decision of the panel shall be final.

1. (13) Family support councils, regional advisory councils, the Missouri Planning Council for Developmental Disabilities and the three (3)-member hearing panels shall protect confidentiality of family records and the privacy of families.
2. (14) To avoid conflict of interest, no family member of a family support council may receive a stipend from that council.
3. (15) A regional center shall not involve staff in the duties of the family support council.
4. (16) To assess the effectiveness of its stipend program, each family support council shall conduct an annual evaluation. By March 31 each year, the council shall request that each family with a stipend complete the Family Support Quality Checklist (See Attachment A) to indicate the family’s level of satisfaction with the stipend program. Using the checklist responses and any other data or information, the council shall compile a written report that includes the number of families receiving stipends, how those families are using the stipends to meet their needs, gaps in the system and barriers that prevent families from making maximum use of their stipends, the number of families denied stipends and reasons for the denials, the number of eligible families on waiting lists, additional funds needed to meet the demand for stipends and any other information that may be useful to the council and the division in operating and administering the program.
5. (17) No later than September 1 each year, each family support council shall submit an annual written report to the division director and appropriate regional center director. The report shall include, but not be limited to, a summary of the council’s activities during the report year, results of the council’s evaluation of its stipend program and council recommendations for improving the operation and administration of the program. and Development Disabilities