PURPOSE: This rule defines terms, establishes eligibility criteria and sets out procedures for providing low-interest loans to families, enabling the families’ members 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 support to eligible families of individuals with disabilities by implementing a family support loan 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 individuals with disabilities and their families aware of the family support loan program;
   3. (C) Determine applicants’ eligibility for services from the division;
   4. (D) Forward applications for loans to family support councils; and
   5. (E) Establish mechanisms and procedures for processing loans.

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) Debt-to-income ratio—Total annual financial liabilities of responsible family members divided by their gross annual income, expressed as a percentage;

   2. (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—The responsible family members’ adjusted gross income shown on the most recent federal income tax return, less all expenses related to the disability of the individual (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 individuals with 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 individual with a disability resides or who is primarily responsible for the physical care, education, health and nurturing of the individual with a disability. The term includes biological or adoptive parents, siblings, extended blood relatives or other persons to whom legal custody of the individual with a disability 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 placements, hospitals, habilitation centers, nursing homes, group homes, supported living, 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 individuals with disabilities 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 member;
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 set out in subsection (4)(D) of this rule and in 9 CSR 45-4.030;
2. (G) Family Support Loan Program Fund— A fund within the state treasury into which and Development Disabilities

funds are deposited for use as loans to eligible families of individuals with disabilities;

1. (H) Family support program—A coordinated system of flexible family support services that enhance family caregiving, strengthen family functioning, reduce family stress, foster community integration, promote individual and family independence and encourage economic self-sufficiency, all to help individuals with disabilities remain with their families;
2. (I) 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;
3. (J) Individual with a disability—A person of any age with a disability as defined in subsection (2)(B);
4. (K) Monitoring—Activities of the family support council as set out in section (13); and
5. (L) Responsible family member—Person(s) within a family household whose income is relied upon by the family as a substantial means of support.

1. (3) The division shall conduct training, education and outreach on the loan 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 with developmental disabilities. 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 45-4.030.

   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 reimbursements 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, reimbursements 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 application for loans and conducting an annual evaluation of the effectiveness of its loan program.
4. (5) Regional centers, regional advisory councils and family support councils shall jointly take steps each year to inform families of availability of loans and of timelines and procedures for making applications.
5. (6) A family whose responsible family members have a combined eligible annual income and that has an individual with a disability residing in the home shall be eligible to apply for a loan if the family’s debt-to-income ratio does not exceed forty percent (40%). No family may receive more than one (1) loan at a time. Families may apply for subsequent loans. In no case shall a family that has defaulted on a loan receive another loan unless the family makes full payment on the earlier loan. No loan shall be approved for more than ten thousand dollars ($10,000) or for a term of more than sixty (60) months. Loans may be unsecured. Interest rates shall not exceed one percent (1%) above the prime interest rate as determined by the federal reserve system on the date each loan is approved. Loans shall be used to purchase goods and services to help families provide for individuals with disabilities. Loans may also be used for payment of funeral and burial expenses for individuals with disabilities.
6. (7) The division shall not deny, reduce or terminate services to a family solely because the family has received a loan.

7. (8) From available funds deposited in the Family Support Loan Program Fund, the division shall make an annual allocation to each regional center for use by the center’s family support council as loans to eligible families.

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

      1. 1. One-third (1/3) of the balance in the

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

1. 2. One-third (1/3) of the balance shall be

allocated among the eleven (11) councils, based upon the estimated number of individuals with 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 balance shall be

allocated among the councils, based upon the number of individuals with disabilities receiving division services and living 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 loan 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 funds among other councils requesting additional funds. As feasible, the reallocation shall be based upon the formula set out in subsection (8)(A). The division shall make the reallocations by April 15 each year.

1. (9) The procedure under which a family pursues a loan is as follows:

   1. (A) The family contacts the regional center, which determines eligibility of the individual with a disability for division services;
   2. (B) If the individual is eligible, the center assigns a case manager within three (3) working days and provides the family an application for a loan (Appendix A) 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;
   3. (C) Within thirty (30) working days after receiving an application, the family support 9 CSR 45-4

council shall determine the family’s income eligibility and its debt-to-income ratio;

1. (D) If the family is found eligible and if sufficient funds are available, the family support council may make the loan. If a family support council makes a loan, it shall, within five (5) working days, provide written notice to the family. The notice shall include the amount and term of the loan as well as instructions on how to obtain the loan through the division. The notice shall be copied to the regional center and to the division director or designee;

2. (E) The division, in conjunction with the department’s Office of Administration, shall establish mechanisms and procedures for processing loans, including—

   1. 1. Execution of promissory notes and

distribution of loan proceeds to families;

1. 2. Receiving regularly scheduled loan

payments from families and maintaining records of those payments;

1. 3. Redepositing loan payments into the

Family Support Loan Program Fund and investing monies within the fund in interestbearing accounts;

1. 4. Providing requested information to

families on the status of their loans;

1. 5. Instituting collection proceedings

against families with delinquent loan payments, that is, notifying the families of their delinquency and, if the families fail to remit payment within a reasonable time, referring the loan defaults to legal counsel for collection; and

1. 6. Periodic reporting to each family sup-

port council on its loan program, including the rate of default on its loans;

1. (F) Eligibility for a loan does not automatically entitle a family to a loan. Depending upon availability of funds, the family support council may have a waiting list for loans 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 loans;
2. (G) If a family is found ineligible for a loan, 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;

3. (H) Decisions on loans 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 by registered mail, return receipt requested, of its decision 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) 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 of one (1) member each from three (3) family support councils other than the council whose decision is being appealed. The panel shall review the decisions of the family support council and regional advisory council; and

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. (10) Family support councils, regional advisory councils, the Missouri Planning Council for Developmental Disabilities and the three (3)-member hearing panel shall protect confidentiality of family records and the privacy of families. and Development Disabilities
2. (11) To avoid conflict of interest, no family member of a family support council may receive a loan from that council.
3. (12) A regional center shall not involve staff in the duties of the family support council.
4. (13) To assess the effectiveness of its loan program, each family support council shall conduct an annual evaluation. By March 31 each year, the council shall request that each family with a loan complete the Family Support Quality Checklist (Appendix B) to indicate the family’s level of satisfaction with the loan 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 loans, how those families are using the loans to meet their needs, gaps in the system and barriers that prevent families from making maximum use of their loans, the number of families denied loans and reasons for the denials, the number of eligible families on waiting lists, additional funds needed to meet the demand for loans and any other information that may be useful to the council and the division in operating and administering the loan program.
5. (14) 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 loan program and council recommendations for improving the operation and administration of the program.

AUTHORITY: section 633.190, RSMo 1994.* This rule was originally filed as 9 CSR 70- 1.015. Original rule filed April 4, 1994, effective Oct. 30, 1994. Amended: Filed May 25, 1995, effective Dec. 30, 1995. *Original authority: 633.190, RSMo 1993. and Development Disabilities