Missouri's Olmstead Implementation |
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Activity No. 6: Recommend any modifications or changes that may be needed to improve existing home and community-based services and consumer-directed care programs. Activity No. 7: Recommend any potential means of expanding home and community-based services or consumer-directed care programs. Direct Care/Attendant Care Recommended modifications, changes, and expansion of community-based services or consumer directed care programs are addressed within the following seven areas:
For each of these seven areas a summary is included that provides:
Return to the top of the page. Direct Care/Attendant Care Background Information:In order to live in the community, many individuals with disabilities require the assistance of a Personal Care Assistant or attendant to assist them in meeting a wide variety of personal care and daily living needs. In addition, the availability of other direct care supports such as homemaker, home health care, and other services are required by others to support their community living. The Direct Care/Attendant Care Sub-Committee of the Commission has focused exclusively on this topic and more specifically explored issues related to wages, turnover, credentialing, training, provider choice, regulations, background checks, and budget issues related to Direct Support Professionals (DSP). Summary of Related Public Comments:A wide range of comments were received on this issue during the public hearings and covered areas related to the lack of availability of assistants, the large number of staff vacancies, high turnover, low pay, lack of benefit packages, direct payment to families, licensing, training, restricted use, use of fiscal intermediaries, and family care. Following are representative comments received during the hearings: Personal Care assistant is of primary concern. I have to have that because I do have to work to support him and I...and I want to be able to give Dillon the things that he needs in our home to stay in our home. There were multiple issues and concerns related to Personal Care Assistants. In order to live in the community, many individuals with disabilities require the assistance of a Personal Care Assistant. One of the subcommittees of the Commission focused on the issue of Personal Care Assistants. Someone at each of the public hearings addressed this topic. Since there are many different aspects to the subject of Personal Care Assistants, this topic is subdivided into some of the issues that people with disabilities face. Availability: The resounding consensus echoed repeatedly was that it was difficult to find Personal Care Assistants. Our biggest problem is home care, trying to get the care for me. That is the hardest thing to keep. It is like a revolving door. We don't know who is coming in one day after the other (Columbia). Staff Vacancies: Many providers described that they could not find people to fill vacancies as Personal Care Assistants. This had caused, for one agency, overtime in excess of 13 thousand dollars a month (Kansas City). High Turnover: The turnover rate for Personal Care Assistants is approximately 30% in a system that employs 3800 direct care workers. One provider stressed this issue with a case study. He has to have 24 hour care so that means x number of people per day that are needed. When you have five or six people and they work two months, then leave, someone else comes along. The provider described how you spend all your time trying to put out little fires instead of trying to help the individual. One provider states that you typically replace these employees about three times each year. Low Pay: One reason for the turnover in Personal Care Assistants is the low pay. The average rate of pay is between $8.50 and $10 per hour. One participant in Kirksville stated the rate of reimbursement has got to be looked at. What these aides do is phenomenal. A Kansas City consumer felt that the pay should be more competitive with other service industries in the state. If not, we will eventually be offering less service than we are now (Kansas City). In Springfield one speaker noted When the average caregiver can go to Wal-Mart and receive wages and benefits, it doesn't do much for keeping a compassionate caregiver in that profession where they are needed most. It was recommended that the pay for Personal Care Assistants be raised $2 an hour immediately. (Kansas City). One Kansas City provider noted that Provider contract increases for direct care staff raises over the last 12 years have averaged three-fourths of one percent while the cost of doing business in the community has increased four percent a year. Lack of Benefit Package: Many providers discussed the lack of a benefit package (health and dental insurance, life insurance, paid time off, 401K) as a detriment to retaining Personal Care Assistants. As one Personal Care Assistant described The reason why a lot of them ain't sticking around theirselves - no insurance (Kirksville). A consumer in Columbia echoed this It's hard to keep the attendant because they want to have benefits like if they had to go to the dentist or something like that, you need to have the money to have to go to the dentist (Columbia). A St. Louis consumer also described this How do you keep them? Because they don't get gas mileage. They don't get benefits, health benefits. They don't want to stay. Direct Payment to Families: One suggestion in Kirksville was that families receive payment for the services that they provide to their family member. A woman in Columbia also asked that her husband to be qualified as a caregiver because he has been put in a situation where there was nobody to come and take care of me. He had to do it. (Columbia). Licensing: Part of the problem that exists is related to licensing. What is the role of the nurse and what is the role of the Personal Care Assistant. There are many turf battles here. There are many tasks that only a nurse can do. If you are paying them [personal care assistant] they cannot pass medications. They cannot set up medications. WE can't open a medication container. WE can allow them to look at the medication. WE can put the medication cup in their hand and assist them with that, but they can't take the pills out of the pill bottle and put them in a cup. It is illegal for anybody unlicensed to do that. I just want to know how that will be directed through more independent programs than through registered nurse monitored programs? The state requires that as soon as reimbursement in involved, then the person must have a certain level of knowledge. As one speaker stated, who is going to be responsible if a client has a skin breakdown and is never told because the aide is not knowledgeable enough to inform them of that? Who is going to be responsible if that aide overmedicates. Training: Training, or the lack of it, for Personal Care Assistants was an issue for some consumers and providers. One speaker who was a PCA reported that PCAs do not have the correct training to be doing the type of work that they are doing. They have people in wheelchairs that are totally disabled that need special types of lifting abilities. These people are not trained to do these kinds of things (Columbia), Restricted Use: In many cases (such as the Division of Aging funding), a Personal Care Assistant can only be used in the home and cannot be used in the community. The personal care part is very restricted for me. I need this support wherever I go. Division of Aging says this must be served at home (Columbia). Abuse:Some participants at the hearings noted that they had experienced abuse at the hands of Personal Care Assistants. I have been stolen from, verbally abused, mistreated in ways you can'' begin to imagine. I cannot believe that these agencies that et paid by the government can get by with treating sick, disabled, and elderly human beings like dogs and not getting a warning notice or reprimand (St. Louis). For another St. Louis consumer When I had a homemaker come out to my home, stole some checks, took the checks and the ID card to the bank and tried to cash it. Fiscal Intermediary: One Kansas City parent discussed the Family Directed Support Program and one of the issues that came to the forefront was the idea of having to involve a fiscal intermediary in order to pay for the care provider. It was found that using available intermediaries that were available appeared to me to be a very costly undertaking. The amount that the FI's were charging seemed excessive in my opinion (St. Louis). One St. Louis resident spoke about the flexibility that they had in hiring Personal Care Assistant. What I want to let you know is that the Department of Mental Health funding allows us to use a fiscal agent. And that has allowed us to pay our worker more, to hire the worker ourselves, and to provide individualized training to that worker concerning Ron's needs. The Division of Aging funding for a personal care assistant does not. Family Care: Some speakers posed the proposition that families be paid the personal care assistant fees to care for their family member with a disability. The reasons for this were similar to that of a woman from Springfield: But I've found with the problem of having people come in the home, I was spending about as much time telling people how to take care of him, showing them how to take care of them. By the time I got through the training and go they last about a week and then they didn't want to do anymore. They weren't getting paid enough and it's hard work and I understood that I was having to go through the same thing again. She described that she could get paid to care for a person with a disability who lived next door, but not her own son. Consumer-Driven: Some consumers highlighted the need for Personal Care Assistants that were consumer driven. I believe it would be in the best interest of the persons with disabilities everywhere if we could get funding for HB 1111 program or Olmstead program that lets the person hire the caregiver they want . . . It is in the best interest of the individual. In St. Louis many consumers described self-directed Personal Care Assistant services. I have aides that come to me. They have no training. I trained them. I know what they can do. They know what they can do. They can go anywhere now and work for a quadriplegic. When they came, they didn't know what a quadriplegic was. State Agency Information:The following are representative comments received from state agencies regarding expanding or improving home and community-based services and consumer-directed care programs relative the issue of personal care: The Division of Mental Retardation/Developmental DisabilitiesThe Division of Mental Retardation/Developmental Disabilities staff recommended the following changes:
Division of Vocational RehabilitationStaff from the Division of Vocational Rehabilitation suggested the elimination of the following barriers:
Division of Comprehensive Psychiatric ServicesThe Division of Comprehensive Psychiatric Services staff suggested that:
Identification of Barriers and Recommendations by Olmstead Committees:Following are barriers and related recommendations from the Gaps and Barriers/Systems Change Sub-Committee related to personal care: Barrier: Division of Aging agency-controlled personal care services are often not available all the time when people need them, for example at night or on weekends. Advanced personal care services are not available in all parts of the state.
Barrier: There are not enough providers available for community supports. If there were more consumer-control options available, people could hire their neighbor or friend - it wouldn't matter if the provider agency didn't have enough staff.
Barrier: Another reason for difficulty in finding attendants is reimbursement rates are too low to pay decent wages to attract quality attendants. In 1990 in Massachusetts, reimbursement rates for personal care assistants were $20/hour. There exists a crisis in the availability of competent direct support professionals. The current labor pool is underpaid, receives few benefits, and receives little training and support. This results in very high turnover and a shortage of qualified direct support professionals.
Timelines and Responsible Parties to Implement Recommendations:The following table summarizes recommendations, identifies agency(ies) responsible for planning and initiating activities to realize each recommendation, and identifies the calendar year in which the results will be achieved:
Recommendations: 1. DA should look for ways to enable in home agencies to have attendants available to work any day of the week at any time the person needs it.
2a. Increase consumer-controlled options. Recruit and train people with disabilities to be attendants.
2b. Provide training to people with disabilities about how to coordinate, negotiate, purchase, direct, hire, fire, attendants, identify quality indicators in DSPs or support service provider agencies. Training to be provided by self-advocacy organizations such as Missouri People First and Independent Living Centers.
3. Increase wage of attendants and find ways to provide statewide health insurance and other benefits.
4a. Consistent with the Caregiver Commission recommendation for direct workers, $2 per hour per year for the next three years, for a total of $6 per hour over the three years, to increase direct workers/attendant workers wages and/or provide benefits. This recommendation is also consistent with previous appropriations.
4b. Minimum of 20 hours of on-the-job training. In addition, Core Competency based training for DSP that leads to credentialing for up to 3 years (optional). An option to test out (or credit for experience) of training hours should be included. Individual training would be provided by the consumer specialized to their needs. Possibly make the credentialing voluntary, but linked to higher pay and benefits through a "career ladder" option.
4c. Consistent with recommendation number 2, there needs to be the development of a skill standard such as the "Community Support Skills Standards" a National Skill Standards for Entry Level Roles in the Human Service Industry developed by Human Resources Research Institute on 1995. HSRI was concerned with the development of competent community-based support human service practitioner (DSHSP). One of the critical pieces is that personal assistants, DSP's, etc., should be trained to meet the needs and preferences of the person with a disability.
4d. There needs to be clarification about the legality of personal attendants to assist with tasks such as medications, colostomies, and wound care under the Nurse Practices Act. If not allowable, the Act should be changed.
4e. A background screening must be completed on all DSP in order to provide services. Currently the caregiver background screening form can be submitted to the Missouri State Highway Patrol and for a fee of $5 you will receive within 15 days information from the entire list checked on the background screening form. The list includes the following: State criminal background checks, conducted by the Missouri State Highway Patrol; Child abuse/neglect records, maintained by the Division of Family Services; Family Foster Care Licensing records, maintained by the Division of Family Services; The Employee Disqualification List, maintained by the Division of Aging; The Disqualified Registry, maintained by the Department of Mental Health; Child Day Care licensing records, maintained by the Department of Health. It is imperative that a common database of disqualified, abusive/neglectful people be developed so that people with disabilities, their families, and Missouri citizens can be confident that people with disabilities are not being put in harms way due to poor record keeping of people who have a history of abuse and neglect.
Budget Action, Federal Action, Statute ChangesNeeded Budget Action:Department of Social Services - Division of Medical Services, and Department of Elementary and Secondary Education - Division of Vocational Rehabilitation:
Department of Mental Health: Comprehensive Psychiatric Services: FY02 Budget Item Department of Mental Health, Division of Mental Retardation/Developmental Disabilities: FY'2002 Budget Request FY'2002 Budget Request Department of Mental Health, Division of Comprehensive Psychiatric Services 3% Cost of Living -- $4,832,150 Federal Action: None required. Statute Changes: Possible change of Nurse Practice Act. This needs clarification first. Return to the top of the page. Housing Background Information:One of the primary requirements for anyone transitioning to the community is adequate housing. Individuals with disabilities need to have a range of living options available to them that are of high quality, accessible and affordable. Summary of Related Public Comments:Comments received on this issue during the public hearings covered issues such as lack of affordable housing, lack of accessible housing, lack of accessible transportation to available housing, and lack of low income mortgage assistance programs. Following are representative comments received during the hearings: At that time the only other option was a nursing home so he lived in a nursing home for a couple of months and he found that wasn't good at all. He wanted to come home right away so he came back home. I had him again for about six years and then I worked with... and we built an apartment complex here in Springfield ... and it had like eight apartments and we would do like home health care for people that lived there, semi-independently. It worked out real well for everybody except my son...because he does require almost total care (Springfield). One of the first requirements for living in the community is adequate housing. There must be adequate housing in the community before the individual can transition. Many challenges were described in the hearings. Illustrative of these are: In Kirksville, a young gentleman described his movement from Fulton State Hospital to an Residential Care Facility to independent living. The difficulty that he was encountering was that they often closed the facility without giving him another option as to where to turn. The same issues were raised in Kansas City availability of quality, accessible and affordable housing within the communities of the individual's choice (Kansas City). In Kansas City one person stated that there isn't enough housing. In Kansas City, it was felt that more low income housing options should include assisting people to rent or purchase an apartment or a house and live with live-in paid roommates. Assisting people to rent or purchase a house and live with nonpaid roommates with a reduction in rent, utilities for the roommate in exchange for some support and additional staff support. They suggested Section 8 which can be used to move people from group homes into an apartment should be used more. Helping people tap into homeownership through low income mortgage programs is necessary. Developing close working relationships with bankers would be essential to facilitating this process (Kansas City). In Kansas City, some speakers described the lack of housing for persons with mental illness who end up in the corrections systems. The only services that they get are being incarcerated (Kansas City). It was reported that in Jackson County the numbers vary from 5% to 15% of the population in our Jackson County detention Center are persons with mental illness. This same issue of adequate, affordable housing came up in the Cape Girardeau public hearings. It was noted that the people that we have in nursing homes right now who want out, they want to stay in like for example Farmington, but the cost of living in Farmington is too expensive and there's not very many affordable accessible apartments available. Not only should housing be affordable and adequate, but for many consumers, it should be on an accessible transportation route. State Agency Information:The following are representative comments received from state agencies regarding barriers and recommendations to expanding or improving home and community-based services and consumer-directed care programs relative to the issue of housing: Division of Aging
Division of MRDD
Division of Vocational Rehabilitation
Division of Comprehensive Psychiatric Services
Identification of Barriers and Recommendations by Olmstead Committees:Two sub-committees addressed housing issues. The following barrier and recommendation is from the Gaps and Barriers/Systems Change Sub-Committee related to housing: Barrier: Affordable, accessible housing is not available. People cannot move into the community if there is nowhere to live.
The following barriers and related recommendations are from the Housing Sub-Committee: Barrier: There are individuals in institutions or whom are at risk of placement in an institutional setting who may qualify for housing assistance, but who are not informed of available housing options or assistance. Accurate, up-to-date information is not always readily available.
Barrier: There is a shortage of accessible affordable housing options for persons with disabilities.
Barrier: The Community Development Block Grant (CDBG) Program is one of the few resources for increasing affordable accessible housing in communities. In Missouri, CDBG funds are rarely used for projects addressing home accessibility.
Timelines and Responsible Parties to Implement Recommendations:The following table summarizes recommendations, identifies agency(ies) responsible for planning and initiating activities to realize each recommendation, and identifies the calendar year in which the results will be achieved:
Recommendations: 1. Find incentives to increase enforcement of Fair Housing Amendments. Work with HUD to increase scattered site accessible housing. All available resources, such as Community Development Block Grants, DMH Housing Coordinator, Housing and Urban Development set asides and Home of Your Own shall be used.
2a. A workable system must be developed to insure that individuals who need immediate, and accurate information about the availability of accessible affordable housing in a community are able to obtain it, including the individual with the disability, family members, and case managers in agencies such as the Division of Mental Retardation/Developmental Disabilities, the Division of Aging, and community mental health centers.
2b. The Missouri Department of Economic Development should establish a "People with disabilities" web page within its "Housing and Community" web page as a resource for persons with disabilities and their families, along the lines of the Federal Department of Housing and Urban Development's "Home and Community" web page at a national level.
3a(1). Increase the use in Missouri of Section 811 (supportive housing for persons with disabilities) for grants to nonprofits to develop accessible rental housing.
3a(2). Increase the use in Missouri of Section 811 (supportive housing for persons with disabilities) for the Mainstream Program - Section 8 vouchers and certificates for persons with disabilities.
3b. Explore how the newly available option of using the Section 8 program for home ownership can be used to expand options for persons with disabilities in Missouri.
3c. Increase the use in Missouri of Section 202 (supportive housing for persons who are elderly).
3d. Explore options to expand use of Medicaid dollars for affordable accessible housing beyond what is currently available in Medicaid waiver programs.
3e. Explore a Housing Disabled Access Tax Credit to assist persons with disabilities or family members with out-of-pocket expenses for housing access modifications.
3f. Explore a tax credit for builders of homes with certain accessibility features to expand the stock of available accessible housing.
3g. Develop a grant program for urgently needed housing access modifications (Emergency assistance/start up dollars).
3h. Explore a "visitability" law similar to that in Texas to require that entities that are awarded state or federal funding assistance to construct single family affordable housing must construct the housing with certain key accessibility features.
3i. Include housing specialists to work on Olmstead Implementation Plan.
3j. Increase the availability of scattered site accessible housing.
3k. Change parameters of state and local service dollars to include housing.
3l. Explore inclusion of accessibility related provisions in the recommendations of the Governor's Commission for the Review & Formulation of Building Code Implementation.
3m. Enhance opportunities for public/private partnerships to improve availability of affordable accessible housing.
3n. Establish, market, and provide consumer assistance for the new low-interest loan program for assistive technology including housing access modifications.
3o. Encourage the use of "universal design" principles for both new housing construction and for housing rehabilitation.
3p. Increase the revenue in the Housing Trust Fund and the usage of the Fund. These dollars could then be used for individuals leaving an institution to return to the community for move-in assistance such as utility and phone deposits, and initial needs such as linens and kitchen equipment.
3q. Contact communities with Consolidated Housing Plans to encourage the use of the Universal Design concept and prioritize housing for individuals with disabilities.
4. Explore with the Missouri Department of Economic Development methods for encouraging and awarding funds to counties and municipalities for projects addressing home accessibility needs.
Budget Action, Federal Action and Statute Changes.Needed Budget Action:Department of Social Services - Division of Medical Services:
Department of Mental Health, Division of Comprehensive Psychiatric Services:
Federal Action:
Statute Changes:
Return to the top of the page. Inter-Agency Coordination and Agreements Background Information:Many individuals with significant disabilities living in the community require the services and supports available through a variety of community and state agencies. This maze of services is at times confusing and difficult to navigate by those living in the community with disabilities. In addition, the communication and coordination between agencies providing these services is at times lacking. State Agency Information:The following are representative comments received from state agencies regarding barriers and recommendations to expanding or improving home and community-based services and consumer-directed care programs relative to the issue of inter-agency coordination and agreements: Division of Comprehensive Psychiatric Services The process (for transitioning) should be individualized to the person and specific circumstances based through planning between the person and his or her treating professional. Adult Head Injury Program The Department of Health is also working on recruiting smaller agencies that have experiences with persons with disabilities, but not necessarily with TBI. In this instance, Service Coordinators do specialized training in these agencies and work closely in a mentoring capacity. Division of Aging The Division of Aging has partnered with hospitals, clinics and other community sites to base staff in settings that are easily accessible for seniors and persons age 18-59 with disabilities. The Community Outreach Initiative also provides DA with the ability to arrange necessary services in a more timely manner. The Division of Aging has partnered with University of Missouri - Columbia to utilize the Community Connection database for our Shared Care program. Shared Care is a system by which caregivers may access information about programs and services to assist them in caring for a loved one. Community Connection is a comprehensive, web-based directory of providers, resources, social service agencies, and other who provide assistance to caregivers. Designation of the lead agency (transition planning) would be imperative in situations that involve multiple agency programs. Establishing a multidisciplinary team to identify needs and potential resources would also be a necessary component. The plan of care would be developed with input from all parties concerned, especially the consumer, family members, physician, provider agency, and other significant persons or agencies. Professional staff support would be provided to those customers who choose to self-direct their care, and the designated case manager would be given responsibility for the coordination of services, communication between all parties involved, and any necessary follow up activities. Any subsequent problems or concerns would be resolved with input from the team. Division of Mental Retardation/Developmental Disabilities Ongoing training is provided from time to time for staff from central office staff. Most recently, central office arranged a videoconference to improve staff knowledge of state plan personal care services and waiver services authorized by Division of Aging, Vocational Rehabilitation, and Bureau of Special Health Care Needs. The training included staff from the Division of medical Services and the Division of Aging. Working to coordinate services with other agencies was stressed. Identification of Barriers and Recommendations by Olmstead Committees:Following are barriers and related recommendations from the Gaps and Barriers/Systems Change Sub-Committee related to inter-agency coordination and agreements: Barrier: There is inadequate coordination or collaboration between the various state agencies that work with people with disabilities. For example, an individual with a disability may be getting services from Division of Family Services and Rehabilitation Services for the Blind but there is no communication between the offices or coordination of services.
Barrier: Conflict between funding streams. One specific instance is a conflict over what the Department of Veterans Administration (VA) will pay and what the Department of Mental Health will pay for. Regulations say that services available through the VA (physician visits, housing) must be paid by the VA, but there is no funding available through the VA so the person doesn't get the community services they need. This affects 3 or 4 individuals a year in the St. Louis area that we know of.
Timelines and Responsible Parties to Implement Recommendations:The following table summarizes recommendations, identifies agency(ies) responsible for planning and initiating activities to realize each recommendation, and identifies the calendar year in which the results will be achieved:
Recommendations: 1a. Data linkages and shared information systems among agencies.
1b. Plan to determine who is the lead agency/primary service coordinator when multiple agencies are involved with a person. The lead/primary service coordinator should stay in touch with all of the others. There will be an inter-agency coordinating task force that will develop a plan for data linkages and service coordination. Action plan will be developed by July 1, 2001.
1c. Service coordinators should know about all services in the "person-centered" plan, not just those that the service coordinator's agency funds. Service coordinators need on-going training.
1d. Have a central phone number that individuals can call and get information about community services - perhaps start this as a pilot July 1, 2001.
1e. Have a universal application form for all home and community-based services so that a person or family does not have to go to several different agencies and fill out several forms. April 1, 2001.
1f. Have a comprehensive chart of what community services are available and what the criteria for each program are. April 1, 2001.
1g. Allow for blended funding streams between all programs and agencies.
Budget Action, Federal Action and Statute Changes.Needed Budget Action:InteragencyA toll free informational phone hotline should be developed and marketed. Department of Mental Health, Division of Mental Retardation/Developmental Disabilities FY'2002 Budget Request - 128 New Service Coordinators Federal Action:None Required. Statute Changes:None Required. Return to the top of the page. Medicaid Services Background Information:Medicaid is a major source of funding for both institutional and community services for individuals with significant disabilities. Unfortunately, there exist many restrictions regarding issues of funding, eligibility, and availability of Medicaid to support individuals with disabilities within community-based settings. State Agency Information:The following are representative comments received from state agencies regarding barriers and recommendations to expanding or improving home and community-based services and consumer-directed care programs relative to the issue of Medicaid Services: Division of Vocational Rehabilitation
Division of Comprehensive Psychiatric Services The Division of Comprehensive Psychiatric Services noted the following:
Division of Mental Retardation/Developmental Disabilities Listed below are the recommendations of the Division of the Division of Mental Retardation/Developmental Disabilities.
Division of Aging
Adult Head Injury Program
Identification of Barriers and Recommendations by Olmstead Committees:Following are barriers and related recommendations from the Gaps and Barriers/Systems Change Sub-Committee related to Medicaid Services: Barrier: The asset limit for Medicaid eligibility are too restrictive. Missouri's asset limits is $1,000 for an individual even though federal law allows up to $2,000. As a 209b state, Missouri can increase the cash asset limits to just $2,000.
Barrier: Waiver services can be limited to a specific number of people.
Barrier: There must be a comparability of Medicaid services between nursing homes and community-based settings. For example, disposable briefs are paid for in nursing homes but not for those who live in the community. Also, there is no comparability of services between Early Prevention Screening, Diagnosis and Treatment (EPSDT) and Medicaid for people over 21 (e.g., assistive technology).
Barrier: Medicaid will pay to "hold" a nursing home bed if a resident needs to go into the hospital temporarily, but will not offer the same option to pay for an attendant while an individual needs to be temporarily out of the home.
Barrier: The assets and/or income of the spouse can either make the individual ineligible or send the individual into a high spend-down. Someone in the nursing home can divide assets and income with spouse to avoid impoverishing the spouse and losing Medicaid eligibility, but person in the community cannot unless they are 63+ on the HCBS elderly waiver. Not all Missouri waivers have this option.
Barrier: When a child, under age 18, is living with his or her parent(s), the parent(s) income and resources are counted in considering if the child is financially eligible for Medicaid. However, if the child enters an institution, the child becomes eligible for Medicaid after being out of the home for 30 days. In Missouri, the option to disregard parent(s) income is only utilized in the Div. of MRDD Sarah Jian Loez Waiver, which can only serve 200 children.
Barrier: The Medicaid income eligibility is too low. There are many people who do not qualify for Medicaid but cannot afford to pay for health care and attendant services out of pocket. Without the attendant services, they are at risk of institutionalization. There are also many people for whom the spend-down system does not work either because of the high spend-down amount and/or the difficulty of tracking the expenditures. Federal guidelines allow HCBS waiver income guidelines to be set at 300% Supplemental Security Income. Missouri, however, has not chosen that option under the elderly waiver or the Independent Living waiver. Previously, persons on spenddown could have prescriptions filled for a three-month period on the first day or near the first day of their spenddown quarter. This assisted many individuals in meeting their spenddown. Effective Dec. 1, 2000, a restriction has been added to the Medicaid Pharmacy Program that limits prescriptions to a 31-day maximum. Therefore it will take much longer for some individuals to meet their spenddown, and others may no longer be able to meet the quarterly spenddown. An exemption process is being developed to waive this restriction for individuals for whom the loss of Medicaid eligibility would result in a "higher level of care" (i.e. institution). However, this requirement still adds to the burden of managing the spenddown process.
Barrier: Inpatient state-operated mental health facilities are considered Institutions for Mental Disease (IMD), and therefore inpatients are not able to receive community-based Medicaid services to facilitate transition back into the community. Individuals who reside in IMDs are not eligible for Medicaid under federal regulations, and therefore cannot receive services such as community support that might be provided through the Comprehensive Psychiatric Rehabilitation (CPR) Program.
Barrier: Amount and scope of personal assistance services is not adequate to meet every individual's need. Many people with traumatic brain injury and multiple diagnoses, who fall between the cracks in the current system of community services. The per capita caps on state plan personal care options harm individuals who need a higher level of care. Not all Personal Assistance Services (PAS) options can be usable on the job.
Barrier: People with disabilities who return to work often lose access to health care and personal assistance that are necessary to be an effective employee.
Timelines and Responsible Parties to Implement Recommendations:The following table summarizes recommendations, identifies agency(ies) responsible for planning and initiating activities to realize each recommendation, and identifies the calendar year in which the results will be achieved:
Recommendations: 1a. Increase the resource level to $4000 for an individual. Legislation should be introduced in 2001 session.
1b. Expand the type of assets that are exempt from asset determination. For example, some types of savings accounts, etc. Lobby for HHS proposed rules that increase states' flexibility in determining Medicaid eligibility.
2a. Waiver services that are allowed by HCFA to be covered by the Medicaid state plan should be worked into the state plan so that they are available to all who need it. Analysis of what can be covered in the state plan and the budget item will be completed by April 1, 2001.
2b. To cover services that are not available under the Medicaid state plan and to cover individuals who need more than the cost-neutrality limit, existing waivers should be expanded to serve more people where analysis shows cost neutrality can be maintained. State agencies that administer waivers will ask for enough funding to cover all individuals and families on waiting lists where analysis shows cost neutrality can be maintained.
2c.If there has to be a waiting list, there should be a monitoring process whereby the state agency must document why someone is still on a waiting list after 90 days. There should be a standard waiting list format which includes the date someone went on a waiting list and the barriers that are keeping the person on the waiting list (e.g., person is looking for housing, there are no more waiver slots). This is not meant to move someone out of an institution before all the community supports are in place, but is to assure that there is a plan and action is being taken to pull all the supports and services together in a timely manner.
2d. To assist adults with head injury, budget authorization for the submission of a Medicaid Waiver will be requested through the appropriations process.
3. Expand Medicaid state plan to include specialized medical supplies and increase number of individuals served on HCBS waivers that provide services not covered in the state plan.
4. Implement the HCFA policy on personal assistance retainer payments.
5. Protect the income of the spouse and allow division of assets in all Missouri HCBS waivers.
6. Missouri should consider exercising the TEFRA 134 Option to allow any child with a disability to continue living at home and become Medicaid eligible by only considering the income and resources of the child and not deeming parental income and resources when determining financial eligibility.
7a. Increase Medicaid income eligibility guideline to 100% of poverty.
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