Community Support Toolkit
Selecting a Community Service Provider
A Toolkit for Assessing Adult Developmental Services
Created by and for Family Members
MaineCare Section 29 Edition
Community Supports Waiver
Steps to Take When Planning for Life After High School
Part One - Section 29 Community Support Waiver
Purpose of the Waiver
Section 29 and High School
Person Centered Plan
Section 29 - Covered Services
Covered Services - Employment
How Families Can Help Their Son or Daughter Get a Job
How to Choose a Provider of Career Planning Services
How to Choose an Employment Specialist
Covered Services - Community Support
How to Choose a Provider of Community Support Services
Covered Services - Home Support
How to Choose a Provider of Home Support Services
Covered Services - Assistive Technology
Covered Services - Respite Care
Part Two - Evaluating Services
Introduction to Evaluating Services
Evaluating Person Centered Planning
Evaluating Employment Supports
Evaluating Community Supports
The Personal Outcomes Measures
This toolkit was written by and for parents and guardians. We have been through the complex and often overwhelming process of supporting a child with a developmental disability from school to adult services. We’ve applied for services, been on waitlists, and eventually received Section 29 waiver services. We’ve interviewed and selected providers before we completely understood the services they offered. We’ve wondered if our children’s days are spent constructively or if this new phase marks the end of their development.
As a result, we’ve identified the need for better tools for choosing providers and determining how services support continued growth and development. Through our experiences, we’ve learned how to make the best use of the community support waiver and want to share our insights with other families.
You can begin using the toolkit by reviewing the brief Steps to Take When Planning for Life After High School. When you are ready to learn more about Section 29, you can turn to Part One, which contains descriptions of key services, guidelines for choosing those services, and frequently asked questions. Part Two offers tools for evaluating services and references to additional resources. At the end of this document there is a survey you can use to give us feedback to help us improve the toolkit for other families.
Whether you have just received the waiver or have had services for a while, we hope these tools can help you make informed choices about covered services, assess their quality, and ensure services are actually effective.
Throughout the toolkit the terms Section 29 and Community Support Waiver are used interchangeably and refer to the same program. Your son or daughter might be referred to as your child, the individual to be served, or as the consumer.
While In School
Having services in the children’s system or through an IEP does not guarantee an individual the continuation of those services in the adult system.
- At age 14, begin Transition Planning through the IEP.
- Ensure the school makes a referral to Vocational Rehabilitation Services at least two years before graduation.
- By age 18, address decision making options (independent, supported decision making, or guardianship).
- Social Security benefits are not automatic. It’s best to reapply for benefits even if your son or daughter received them as a child. If he/she is not receiving them, apply at age 18.
- At age 18, get an Adult or Transition case manager who knows the adult system and who can help you apply for services that best meets your child’s needs. In children’s services, a case manager is not always necessary. However, your child can only access adult services with help from an Adult or Transition case manager.
- If necessary, get on waitlists for services.
- Become or remain a strong advocate. It can be frustrating and tiring but it may be the most important thing you can do.
If there is a gap between school and adult waiver services you can:
- Private pay for a day program (expensive option).
- Identify volunteer opportunities.
- Help expand skills by taking classes, using public transportation, and increasing responsibilities at home.
- Foster relationships with peers, neighbors, and other members of the community.
- Help your child understand his/her disability and learn to self-advocate.
Section 29 Waiver
When you receive the Section 29 Waiver, it’s time to visit programs and interview service providers.
Section 29 covers many services including:
- Work Support
- Community Support
- Home Support
- Assistive Technology
Programs and service providers are different. Don’t be afraid to ask lots of questions.
Always make employment a goal, even if you start with just a few hours each week.
If necessary, get on waitlists for the programs or services.
Person Centered Plan
Your case manager will help develop a Person Centered Plan (PCP) which describes dreams and goals as well as the services needed to reach them. Having a PCP is a DHHS requirement.
Keep in Mind
- Create and hold on to an optimistic vision of the future.
- Section 29 waiver services can help build a meaningful life for your child.
- The Section 29 waiver is not intended to meet all of a person’s needs.
- You can choose and change any of your services.
- Families can work with providers to ensure services yield the desired results.
Special Needs Trust
If you have any assets, such as a life insurance policy, consider talking to a lawyer about a Special Needs Trust. When you pass away, you may want to know that your child remains financially eligible for government support.
“For people with IDD “living in the community” does not necessarily mean that a person has a “life” in the community”.
Thirty years ago, living in the community often meant simply that one was not living in an institution. Today, being part of one’s community has evolved to include diverse human experiences including having one’s own home, going to work, participating in a range of activities and events, and spending time with family and friends.
Section 29 services are intended to help individuals gain full access to their neighborhoods and communities so they can create the type of life they want for themselves. Services are meant to be individualized, meaningful, and to make a positive difference in each person’s life.
Individuals and their families can maximize the Community Support Waiver by using it to improve work and independent living skills as well as participation in community life. The most effective services contribute to the development of natural, “unpaid” supports fostered through personal, family, work, and community relationships.
In the adult service system, individuals with intellectual disabilities or autism must work with a case manager in order to access services. Individuals can choose their case managers and ask for a new one if they are not happy with the case management services they receive.
What is the role of the Adult Case Manager?
- To determine, coordinate, and arrange waiver services.
- To facilitate, implement, and monitor the Person Centered Planning process.
- To ensure all needed services are described in the Person Centered Plan. Services that are not in the plan cannot be ordered.
- To ensure that providers delivering services are accountable for their services.
- To help individuals apply for Social Security benefits, housing, and MaineCare.
- When needed, to provide direct support such as transporting an individual to an appointment.
To avoid any conflict of interest, case management services, such as coordinating the Person Centered Planning process, are not delivered by the same agency that is providing other support services.
As case managers play a significant role in the oversight of adult services, it is important for families to find a knowledgeable and responsive case manager. Ideally, a case manager knows the adult services system well, but also invests time and energy getting to know the individual being served equally well.
Individuals and families may want to interview several case managers or case management agencies. There can be a lot of turnover in case management positions so families may find it especially helpful to make sure the agency leadership is responsive.
Individuals are offered Section 29 waiver services on a chronological basis. The timing depends on when the waiver application was made and how many others are applying around the same time. It can be hard to get the timing just right and as a result a young person may be offered the waiver when he/she still has one or two years left of high school.
The following questions may help you decide whether to accept or postpone the Section 29 waiver when your son or daughter is still in high school.
Q. My child is still in school and was offered Section 29. When do we have to decide whether or not to accept Section 29?
A. After you receive a written offer of waiver services you have 60 days to respond. If you accept the waiver you have 6 months to start using services. If you do not respond to the offer or do not begin using services within 6 months, your child’s name is removed from the waitlist. You may reapply at any time for waiver services by talking to your case manager.
Q. How do we decide whether or not to take the Section 29 waiver if my child is still in school?
A. Talk to your case manager about the pros and cons of this decision. Be certain you understand the services you can receive under Section 29. If you consider not accepting Section 29 right away, find out if there is a waitlist for Section 29 or if one is anticipated in the near future.
Q. Which Section 29 services can my child use while in high school?
A. While enrolled in high school, your child can access Home Supports, Career Planning, and Assistive Technology services. Your child cannot access Community Support, Work Support, or Employment Specialist services while still enrolled in school.
Q. Can my child receive services under Section 29 and still use Section 28 or Section 65 services?
A. Your child can no longer access Section 28 or Section 65 services once he/she accepts Section 29. To understand which waiver best meets the needs of your child, talk to your case manager. Your case manager can help you compare the support you currently receive under children’s services with the support you can receive under adult services.
The Person Centered Plan (PCP) is a formal, comprehensive document that describes services to be delivered. Although the PCP is a description of needed services, the primary purpose of the planning process is to develop a vision for the future. The individual to be served, the case manager, and other members of the team meet to identify the short and long term goals that need to be met in order to realize that vision.
There are different approaches to person centered planning and families are encouraged to ask their case manager about them. Two of the best-known tools are PATH and MAPS. Websites and publications that offer more information about planning tools can be found in this document under Resources.
Families may wish to use the five valued experiences to help them describe a desirable future.
- Community Presence: How can we increase the presence of the person in local community life?
- Community Participation: How can we expand and deepen the person’s relationships?
- Encouraging Valued Social Roles: How can we enhance the reputation the person has and increase the number of valued ways he/she can contribute?
- Promoting Choice: How can we help the person have more control and choice in his/her life?
- Supporting Contribution: How can we assist the person to develop more competencies?
As the team moves from visioning to developing a concrete plan, the team can consider goals and preferences from any or all of the following topics:
- Career planning
- Community participation
- Income and savings
- Healthcare and wellness (including nutrition, physical exercise, behavioral and mental health, and dental care)
- Post-secondary or Continuing Education
- Assistive Technology
- Friendships and other relationships
- Religion and spirituality
- Respite Care
- Crisis and emergency planning
- Coordination of goals across service areas
Who is on the Planning Team?
The individual and family members or guardians working with their case manager determine the composition of the planning team, set the agenda, choose the facilitator, and decide when and where to meet. The planning team might include any or all of the following:
- Person (the individual who needs services) Required to attend
- Case manager Required to attend
- Family, guardian, friends
- Correspondent or scribe
- Agency staff who already work with the individual or are likely to work with him/her in the future
- Specialists such as a Behavioral Psychologist or a Speech and Language Pathologist
- Disability Rights Advocate
It is strongly recommended that families or guardians take time to review the final plan to be certain it is accurate and comprehensive. While a legal guardian is not required to attend a PCP, he/she is required to sign off on the plan.
Families/Guardians and individuals have choices in regards to all their services and their service providers, including the choice of a case manager.
The Section 29 Community Support waiver covers a broad range of services that can help individuals become engaged and valued members of their community. People who live with their families or on their own can use the waiver. Section 29 covers the following services
- Employment Support (this includes the new Career Planning Service)
- Community Support
- Home Support
- Assistive Technology
- Respite Care
Families and individuals can choose their services and their providers. If families are unhappy with services they have the option to request new services and providers. While the mix of services can be individualized, the total amount that can be spent on the service package is limited. Services are also funded at different rates, which impacts available services. Case managers work with families to prioritize services and determine their cost to ensure services are covered under the funding cap.
“All individuals, regardless of disability, can work – and work optimally with opportunity, training and support that builds on each person’s strengths and interests.”
Work is a fundamental part of life for individuals with or without disabilities.
Having meaningful employment is associated with:
- Financial gain
- Better health
- Increased self-esteem
- Greater independence
- Becoming a valued member of one’s community
What Key Employment Services are covered under Section 29?
- Career Planning
- Employment Specialist Services
- Work Support–Individual
These services help individuals plan their career, explore work opportunities, receive training, develop and refine skills, and sustain employment.
The Department of Health and Human Services (DHHS) and the Department of Labor’s Vocational Rehabilitation (VR) Program work together to help individuals obtain and maintain competitive employment.
VR receives government funding to serve students while they are in high school and once they have the Section 29 waiver, but not for any period in between.
What is the Role of Vocational Rehabilitation (VR)?
VR’s role is to help individuals decide what type of job they want, find a job, and then provide basic training to do the job until an individual feels stable at work. VR services are time-limited. In general, VR services end once an individual is employed for at least 90 days in a job agreed upon by the individual and their VR counselor.
VR works with youth in high school to begin setting employment goals. If an individual receives a Section 29 waiver towards the end of high school, VR can provide seamless services. If an individual graduates and is on a waitlist for Section 29, VR suspends services until the individual receives the waiver.
Once a person receives the Section 29 waiver, VR services include:
- Development of an Employment Plan
- Completion of assessments to determine a person’s skills
- Determination of the need for long-term supports
- Determination of the need for specific accommodations or staff training
- Recommendations regarding the level of ongoing supports
- Employment Specialist and Job Development Services
- Extensive re-training or support if required to re-enter the job force after one has lost a job
What is the Role of DHHS?
DHHS’s role is to provide work supports after a person has already started a job.
Once a person receives the Section 29 waiver, DHHS services may include:
- Employment supports ordered through the PCP process based on recommendations from a VR counselor
- Employment specialist services once a person is stable in a job
- Funding for long-term work supports if needed
- Support to help an individual advance in his/her career by promoting development of specific work skills
- Re-employment supports if a person loses his/her job
Individuals enrolled in school who accept Section 29 services can use Home Supports, Career Planning, and Assistive Technology services. They cannot access Community Support, Work Support, or Employment Specialist services until they graduate.
Career Planning is a direct, time limited service that helps a person identify a career and the work conditions that will best support their employment.
Career Planning Services include:
- Discovering Personal Genius™ process
- Referral for an Assistive Technology Assessment to increase independence in the workplace, if needed
- Referral to Benefits Counseling if needed
- Referral to Vocational Rehabilitation (by week #2) if such a referral has not already been made
An individual can pursue Career Planning before finding employment or while employed. If an individual is already working, Career Planning may be used to find another job more consistent with a person’s skills and interests or to explore advancement opportunities in his or her chosen career. An individual can access both VR services and Career Planning Services at the same time.
Limitation: Career Planning is limited to 60 hours annually, to be delivered in a six-month period. No two six-month periods may be provided consecutively.
Employment Specialist Services
Employment Specialist Serviceshelp individuals maintain employment. Services include:
- Periodic supervision at a job site to improve productivity, minimize the need for paid supports by promoting natural workplace relationships, ensure the person’s safety, and promote inclusion
- Help changing jobs when a person’s career goals are not being met
- Help starting and sustaining a business
Work Support–Individual is a direct support to improve a person’s ability to remain employed. The service begins after a person has received services by VR and the need for on-going support was determined.
Work Support–Individual is offered by a direct support professional also referred to as a Job Coach. At the job site, a Job Coach might offer any of the following supports:
- Training to meet job expectations
- Reducing distractions and improving focus
- Time management
- Work place safety
- Requesting help from a supervisor
- Getting along with co-workers and customers
- Reducing the need for paid support
Off the job site services may include:
- Improving hygiene
- Dress code
- Practicing social skills
- Using public or private transportation to get to work
Work Support–Individual can also be used to help a person run his or her own business.
Frequently Asked Questions
Q. What is the difference between the Section 29 Career Planning service and other career planning services?
A. The Section 29 Career Planning service uses a trademarked and structured approach (Discovering Personal Genius™) to identify the ideal employment conditions for an individual. This service is not necessarily “better” but is more customized than other approaches.
Q. Can a person look for a job during the career planning process?
A. Yes, although it’s recommended that he/she follow the steps outlined under the service. The service is designed to identify the ideal working conditions so that long term employment goals can be reached and employment sustained.
Q. Can a person go through the career planning process again if he/she is not happy with a job?
A. Yes, but at least six months need to have passed since the last Career Planning service ended.
Q. I was told that my child’s disability prevents him/her from working. What can I do?
A. First, ask your case manager to schedule a meeting with your VR counselor to problem solve how to help your child become employed. You can request additional assessments by a professional with training and experience working with individuals with disabilities similar to your child’s. The purpose of additional assessments would be to identify your child’s strengths and workplace modifications that can support his/her employability. For example, an occupational therapist could assess your child in regards to improving his/her fine motors skills. A behavioral psychologist could develop a plan that supports pro-social behavior. Such assessments should also recommend specific training for employment specialists and job coaches to ensure recommendations are correctly implemented.
If one VR counselor is not helpful, you can ask for a new VR counselor.
You can also file an appeal through the Client Assistant Program (CAP), administered in Maine by C.A.R.E.S., Inc. If your appeal is unsuccessful, your case manager can help you apply for work support to be covered under Section 29. If neither VR nor DHHS provides work support, you can file a grievance with DHHS.
Q. My case manager advised us to pursue day programming first and think about employment in the future. Is this good advice?
A. No. At the person centered planning meeting it’s recommended that you and your child consider making employment a priority. You can set goals to create a path to employment. For example, an individual can volunteer and be responsible for more chores. If appropriate, start with modest employment goals such as working for a few hours each week. As it can take time to find the right job, it’s wise to begin accessing employment support services available under Section 29 as soon as possible.
Q. My child has trouble reading non-verbal social cues and can sometimes offend others or be misinterpreted. How can he/she get help learning to get along better with his/her boss and co-workers?
A. You can share information at the person centered planning meeting. Subsequently, socials skills, both strengths and weaknesses, should be reviewed with the VR counselor so your child’s on-the-job needs can be anticipated and addressed before he/she is placed in a job. You can also ask your VR counselor to order an assessment of pragmatic language skills by a speech and language pathologist.
Q. My child has a hearing impairment. What types of support can he/she get at work to ensure he/she can meet his/her potential at work?
A. The Department of Vocational Rehabilitation’s Division for the Deaf, Hard of Hearing & Late Deafened can offer your child the necessary supports.
Q. If my child works, will he/she lose his/her Social Security benefits?
A. Either your VR counselor or career planning provider will refer you to benefit counseling. A benefits counselor can answer questions about protecting Social Security benefits and make a referral to related services.
Q. At school, my child’s ability to express himself/herself was aided by access to assistive technology. Can he/she get similar support under Section 29?
A. Assistive Technology (AT) is a covered service under Section 29. Having up-to-date AT assessments conducted by professionals with experience and training to work with your child’s specific disability will help your child receive the AT supports most suited for him/her.
Q. My child has worked in a fast food restaurant for several years. He/She has never gotten a raise or had an opportunity to advance. Are there any supports under Section 29 to help him/her move up the career ladder?
A. Section 29 includes Career Planning. Your child can use the career planning service to identify ways to gain new skills to get a more demanding job with his/her current employer or get support looking for a new job that might offer more job growth.
Families and friends can play an important role helping those with disabilities plan for employment and find a job that is a good fit.
Families know their child better than anyone else and can contribute important insights throughout the job development process. To help an individual find the right job it is important to share information about:
- A person’s interests and skills
- A person’s learning style
- A person’s social skills
- Environments that support his/her success
Anticipate and specify needed accommodations and supports
Families understand the types of support their child needs in order to meet his/her potential. It’s important that the correct supports are in place to promote vocational success.
Issues to consider:
- Sensory Processing
- Behavioral Concerns
- Medical Issues
- Mobility Needs
- Communication Style
Be sure assessments are up to date. Assessments such as Speech and Language, Occupational, and Assistive Technology assessments should identify goals and strategies that help a person succeed. If an individual has benefitted from a behavior plan, that plan should be shared with the case manager and VR counselor as such plans can be adapted for the workplace.
Families often have networks of friends and neighbors who can provide opportunities for learning about different types of work, job shadowing, and information about actual job openings. Families can model and encourage their child to network at events and within their communities. There are potential employers everywhere.
Self-advocacy and self-determination
Families can encourage their child to articulate his/her goals to help him/her find meaningful employment. It’s important to help young adults talk about their strengths and any new skills they wish to acquire.
Both Community Support and Home Support services can be used to build pre-vocational skills and “soft skills” that contribute to an individual’s ability to find and keep a job. The sections in this document on Community Support and Home Support services describe these skills.
Potential questions to ask when choosing a Career Planner:
- Are you a certified employment specialist?
- When did you receive your certification to provide career planning?
- How many people have you helped with career planning?
- Tell me about some of your experiences helping people discover a career that was right for them.
- How long does it take to develop a career plan?
- How much time will you spend with me each week?
- Where will we meet?
- What types of activities will we do together?
- What is expected of me during career planning?
- How will you keep in touch with me?
- When are you available to help me with career planning?
As providers of career planning services have small caseloads of 4-5 clients at a time, individuals may find they need to wait for services. Over time, as more employment specialists are trained to offer this services, wait times should become shorter.
Interview several employment service providers and ask for consumer and family references. When visiting a service provider, pay attention to how you feel about the staff and office environment. Do you feel welcome, comfortable, and respected? Does the program offer a supportive approach to employment assistance?
The following are suggestions for questions you can ask when you meet with an employment specialist. You don’t have to ask all of the questions. Select the ones that are most important to you. The answers you get will help you choose the employment specialist who can best help you
Questions about the Employment Specialist:
- How much experience do you have working with clients like me?
- Please explain the different services you offer.
- What is the difference between an employment specialist and a job developer?
- How long will it take to help me find a job?
- How much time will you spend with me each week?
- How will you stay in touch with me?
Questions about services:
- How will you help me find a job?
- How will you learn about my interests?
- How will you assess what I’m good at and where I need help?
- How will some of my needs be met? (Ask about any communication, sensory, social, or medical needs or concerns.)
- How will you determine how to match my learning style with the right job?
- Will I receive training before I start a job?
- What will be my responsibilities during the job search?
- How can my family and friends help me find a job?
Questions once employed:
- Who provides supervision?
- Who will train me if I need to learn or improve any skills to do the job?
- Will the work supervisor receive any training on how to best support me?
- How can Assistive Technology improve my job opportunities?
- Will there be opportunities for growth at my job?
- How will you help develop natural (unpaid) supports at work?
- How will any problems at work be addressed?
Community Support services are provided outside the home by direct support professionals (DSPs). Services promote community accessand inclusionand help individuals develop skills that support their health and well-being.
Individuals, their families and teams set personal goals that form the basis for a service plan that is implemented by each Community Support program. The plan might be referred to as an Individual Service Plan (ISP), Habilitation Plan, or other type of plan.
Community Support Programs are also referred to as Day Programs or Day Habilitation.
Where are Community Support services offered?
Community Support services can be offered in the community or at a facility. They can also start or end at a person’s home.
How are support services offered?
Agencies choose where and when to offer services and determine the types of activities to emphasize. Three different program models are described below.
Time Limited Programs with a focus on expanding independent living skills and community connections
Informally referred to as “launching” programs, they can help individuals enroll in college or continuing education classes, use public transportation, manage their finances, and access area resources. These programs prioritize the development of natural or unpaid supports that complement paid supports. In general, these programs are time limited to two years.
Personal Development Programs with a focus on helping individuals expand their interests and build skills through the arts, cooking, recreational activities, and volunteering
These programs usually take place both in the community and at a fixed program site. Many agencies choose to focus on specific types of programming. For example, some focus on outdoor adventures while others emphasize the visual or performing arts.
Services that originate or end at a person’s home
Within the scope of Community Support, there may be some activities that require that services be provided in an individual’s home. Typically, this involves the start or end of a service. This is allowed as long as it does not duplicate any other services.
How does a person make the best use of Community Support hours?
Due to the limited hours that Community Support services are offered (usually not more than 4 hours per day), families may wonder how their son or daughter will remain occupied and adequately supported before or after day programming. During the process of developing Community Support plans and goals, families may consider the following ways that Community Support can promote employment, community engagement, and greater independence. Skills taught at a Community Support program can be reinforced in other environments until they are generalized. Individuals can have any of the following activities included in their Individual Service Plan (ISP) within their budget.
Using Community Support services to promote Employment
Community Support can help prepare an individual to be employed or to improve their on-the-job skills in an existing job. Experiences and skill building activities can be provided in the community, at a program site, and/or begin or end at a person’s home.
- Joining a job club to learn about what it takes to get and keep a job
- Obtaining a state I.D.
- Volunteering in places where it might be interesting to work or network
- Creating a resume/references/employment portfolio
- Accessing classes at the Career Center
- Accessing classes at a local college or adult education program
- Exploring different types of jobs and setting an employment goal
- Using public transportation (busses and taxis)
Social skills needed for a job, whether with fellow employees or supervisors, can be modeled and reinforced in a community support program.
- Asking for direction or other help from a supervisor
- Listening and following directions
- Accepting suggestions or constructive criticism
- Understanding and respecting physical and social boundaries
- Respectful communication with peers, including those from different racial groups or cultures
- Interacting with clients at a volunteer job
- Learning to handle conflict
Using Community Support services to promote independent living skills
“Soft skills” that are taught directly or indirectly at a program can help individuals become more independent as well as more employable.
- Good hygiene
- Dressing neatly and appropriately for a task or the weather
- Following directions
- Paying attention to a task
- Time management
- Safety skills (crossing streets, getting help, self-protection)
- Budgeting and managing savings
- Doing non-preferred tasks
Using services to build “social capital” and promote community engagement
“Social capital is a set of relationships and social ties, with organizations and to individuals, that can expand one’s opportunities making choices, increase one’s options and lead to a more enriched quality of life.”
- Learning what it means to be an adult community member
- Learning about one’s own community resources and opportunities to get involved
- Learning how to be involved in community activities, clubs, social events
- Learning how to connect with people in one’s neighborhood and community
- Learning what it means to be a good neighbor
Limitations: An individual may not receive Community Support while enrolled in high school. An individual may not receive Community Support at his or her place of employment.
Frequently Asked Questions
Q. We chose a day habilitation program but were told that our child’s needs make him/her too challenging to be accepted. No one told us that a Community Support program could reject our child. What do we do now?
A. Work with your case manager to identify a provider who will work with you and your child. Your case manager will continue to make vendor calls, but it is advisable for families and the case manager to make direct contact with agencies as agencies do not always reply to vendor calls. Prior assessments that describe successful intervention strategies should be shared with agencies to help them understand how they can serve your child. MaineCare may cover new assessments by a behavioral psychologist, occupational therapist, or other professional if assessments are outdated. Consider ways to initially provide additional support for your child when he/she is at a program and make a plan to fade that support if possible. Families always have the right to file a grievance with the state if they cannot find an agency to provide the Section 29 services of their choice.
Q. Why can’t my child get 1:1 support at his/her day program if that is what he/she needs?
A. Community Support programs are only required to serve clients using a 1:3 staff to client ratio. Although agencies can choose to serve clients with a lower staff to client ratio such as 1:2 or 1:1, they may not be required to under current state funding formulas. Talk to your case manager about your concerns and your options.
Q. Can my child attend two different Community Support programs?
A. Yes, but you need to talk to each provider about their policies. Most agencies offer flexible programming that allows a person to attend two or even three different programs a week while some service providers require daily attendance.
Community Support service providers offer many different types of programs and activities. To help you find the program that best meets your child’s needs, you may need to visit several programs and ask in-depth questions. The following are suggested questions that you or your child can ask about Community Support services. Select the questions that are most important to you.
Questions about models of Community Supports:
- What is your philosophy or model for delivering Community Support services?
- Are services offered primarily in a facility or in the community?
Questions about the application/enrollment process:
- What does the application process entail? How long does it take to get enrolled?
- Does my child need to spend one or more days shadowing?
- How do you determine if my child is a good fit?
- Is there a waitlist to enroll? How long is the wait?
- May I see a copy of your program policies?
Questions about the consumers going to the program:
- What is the total number of consumers served?
- What is the size of the group?
- What is the staff to consumer ratio?
- What is the median age of those attending?
- Describe your son or daughter and ask if there are other consumers with similar skills.
- Are there other consumers with a living situation similar to your child’s living situation (live with family, in their own home, etc.)?
- Do you accept individuals at different functional levels?
- Do you accept everyone who applies?
- Do you accept individuals with medical needs?
- Have you ever asked anyone to leave the program and why?
- How do you handle problems?
Questions about programming:
- What are your hours of operation?
- Is there extended programming before or after regular programming for a fee?
- What types of programs do you offer?
- Can consumers choose their activities?
- How often can consumers change activities?
- How much time will my child spend in the community and in the facility?
- Which programs or activities are offered in the community?
- Do you offer programs that promote greater independence in the community such as banking, using public transportation, and learning about area resources?
- Do you foster skills that help consumers find and remain employed?
- Do you help consumers develop friendships with their peers?
- Do you help consumers develop “natural supports” (unpaid) in the community?
Questions about staff:
- What are staff qualifications?
- What training is offered to staff?
- Are staff supervised while working with consumers and if so, how often?
- What is the rate of staff turnover? What are you doing to retain your best staff?
- Do you have other specialists such as a Board Certified Behavior Analyst (BCBA) or Occupational Therapist consult in order to improve the behavior or skills of a consumer?
- Can a family bring in members of their child’s team to observe and consult?
Questions about planning and goals:
- What is the process for setting individual goals?
- How do you measure whether goals are being met?
- How do you determine the most effective strategies to help consumers meet their goals?
- How will you determine if my child is benefitting from your program?
Questions about quality:
- How do you evaluate the quality and effectiveness of your programming?
- What are your indicators of quality programming?
- Do you survey staff, consumers, and families to gather feedback about programming?
- How do you address concerns of families or consumers?
Questions about a parent’s or guardian’s role:
- What is a parent’s role when a consumer is his or her own guardian?
- May a parent/guardian visit or observe the program?
Home Support is provided in the home by a direct support professional (DSP) to improve and maintain a person’s ability to live as independently as possible.
What Home Support services are covered?
- Training and personal assistance with Activities of Daily Living (ADLs)
- Training and personal assistance with Instrumental Activities of Daily Living (IADLs)
- Personal development and well-being
What are ADLs?
ADLs are routine activities that people tend do every day including eating, bathing, brushing teeth, dressing, toileting, and walking.
What are IADLs?
IADLs are the activities that support an independent life style. These include shopping, cooking, using the telephone or computer, keeping track of finances, managing medications, and safety skills.
What is personal development and well-being?
These are activities that help a person develop and maintain friendships and other relationships, be physically active, learn how to access community events and resources, and participate in spiritual or religious activities.
Home Support activities that take place in the community or support community inclusion are allowed as long as they do not duplicate Community Support services.
How can Home Supports be used to support Employment?
Getting and keeping a job involves many “soft skills” that can be learned and practiced at home. These include:
- Good hygiene
- Dressing neatly
- Listening and following directions
- Paying attention to a task
- Time management and following a schedule
- Budgeting and managing savings
- Doing chores
- Decision making and prioritizing
- Interpersonal skills
- Using public transportation
Home Support goals should be coordinated with goals developed under other service plans such as Community Support or Work Support plans.
Home Support–Remote is a service that covers the staff who are monitoring an individual at home. Support must be provided in real time through a range of technological options including electronic sensors, video conferencing, environmental sensor (movement, doors, temperature, smoke, etc.), video cameras, microphones and speakers, as wells as health monitoring equipment.
What is real time?
Real time means theremote support provider has staff available 24 hours per day 7 days per week to deliver direct 1:1 care when needed.
Limitation: Home Support is limited to 18 hours per week.
Frequently Asked Questions
Q. The provider I chose for Home Support cannot staff all of my child’s hours. What do I do?
A. Your case manager should continue to issue vendor calls to either find a single agency to fill all of your child’s hours or to find a second agency to fill remaining hours. (You can get Home Support from two different agencies if necessary.) It’s recommended that you and your case manager also contact agencies directly to ask about availability as agencies do not always answer vendor calls.
Q. I was told that if I do not use hours, I could lose those hours as it appears my child needs less support.
A. It is your case manager’s responsibility to continually document your child’s needs and to keep the regional resource coordinator informed of those needs.
Q. Can a person receive a combination of direct and remote Home Support Services?
A. Yes, but the total cannot exceed 18 hours.
Think about your requirements, abilities, and preferences to help you find a provider that will be a good match for your family. For example, if you want your child to get daily exercise you may want to request staff who enjoy being active. If your child is easily over stimulated you may want to find staff who understand how to reduce sensory overload.
When choosing a provider consider asking the following questions:
- How does the agency approach Home Support for an adult differently than Home Support for a child under children’s services?
- Does the agency have the staff to fulfill the required hours?
- How does the agency retain its best staff and reduce staff turnover?
- Describe your family’s values and priorities and ask the agency how they can find staff who will be a good fit for your family.
- Describe specific needs and ask how staff will be trained to meet those needs.
- How will the agency ensure that service plans are coordinated with home support goals?
- How often will direct support staff receive on-site supervision?
- What is the process for problem solving?
- How often will you receive updates on progress?
Assistive Technology (AT) can be a device or a service used to increase, maintain, or improve an individual’s functional abilities. Assistive Technology Supports include:
- Assessment of an individual’s Assistive Technology needs
- Coordination and use of therapies, interventions, or services with Assistive Technology devices
- Training or technical assistance for the individual and/or for family members who will help an individual use the Assistive Technology
- Training or technical assistance for professionals who will help an individual use the Assistive Technology
Equipment or Devices:
- Purchase or lease of Assistive Technology devices
Transmission (Utility Services):
- Cost of the transmission of data required for use of the Assistive Technology device via internet or cable utility
AT assessors are generally not experts in every kind of technology. You should feel comfortable asking the assessor about his/her training and experience in regards to your child’s specific AT need, whether it is home accessibility, personal safety, communication, vision technology, hearing technology, computer access, or mobility. Request an assessor with experience and expertise that matches your child’s needs.
Questions about Assistive Technology
Q. Will direct support staff get training in the use of the equipment?
A. Yes. Assistive Technology training for the staff working with your child will be covered, however the training time must fall within the 8 hour time limit on AT services.
Q. My child had an AT assessment done but I don’t think it was comprehensive or accurate. Can I get a second assessment?
A. If your allotted hours are not used up (8 hours are allocated), you can ask for another assessment. If the hours are used up, you cannot get a re-assessment paid for under Section 29 until the following year. You can explore if other specialists such as speech and language pathologists, audiologists, and occupational and physical therapists can assess a person’s AT needs and if MaineCare (or other insurance) will cover their assessments.
Respite Careis a short-term service than can be provided in a person’s home, a provider’s home, or other location approved by a respite agency or DHHS.
When this toolkit was released (Winter 2016) Respite Care services were not yet being offered. Check with your case manager to see if this service is available.
Why Evaluate Section 29 Services?
Expectations for community supports are changing for the better with greater emphasis on competitive employment, diverse housing opportunities, and full community inclusion. Tools for determining the effectiveness and quality of different services have not always kept pace with these changes. It is mostly up to individuals and their families to ensure services are yielding the desired results.
After you have received support services for a while, you want to know that your services are actually working for you. Your services may support you at work, in the community, or at home. The agencies that deliver your services should schedule meetings with you twice a year. You can always request additional meetings. If services are working, you can expect to regularly change and update your goals. If your goals are always the same it may mean those are not the best goals or perhaps that you are not meeting your potential.
If you are not happy with the services you are receiving you can ask your case manager to help you find a new service provider. You can even ask for a new case manager if you think your current case manager is not as helpful as you would like.
In the following pages you’ll find tools to help you evaluate your Person Centered Plan and your Work, Community and Home supports. Some tools have been developed by other organizations while some are being offered here for the first time.
The evaluation tools shared here are designed to foster conversations about quality among families, individuals served, and the agencies serving them.
The following questions can help you decide if your employment supports are meeting your needs.
The following are some quality indicators that can help you assess the benefits of your community support services.
The Personal Outcomes Measures (POMs) look at whether services and supports are having the desired results or outcomes that matter to an individual. POMs are organized into 3 key factors and 21 personal outcome measures. The formal POM tool should be used by a trained professional. However, the indicators can be used informally as a starting place to help individuals and their families determine if services are beneficial.
ADLs Activities of Daily Living
AT Assistive Technology
DHHS Department of Health and Human Services
DSP Direct Support Provider
HCBS Home and Community Based Services
IADLs Instrumental Activities of Daily Living
IDD Intellectual/Developmental Disability
IEP Individual Education Plan
ISP Individual Service Plan
OADS Office of Aging and Disability Services
PCP Person Centered Plan
POM Personal Outcomes Measures
VR Vocational Rehabilitation
Direct Support Professional (DSP) – A direct support professional (DSP) works directly with one or more individuals with disabilities to improve their skills at home, at work, or in the community. The number of individuals being supported by a DSP depends on the service being provided, where the service is offered, and the individual’s Individual Service Plan (ISP). For example,a DSP generally supports several individuals at the same time when working at a community support program. At home or work, a DSP generally supports one individual at a time.
Employment Specialist – An employment specialist is a direct support professional (DSP) with specialized training who provides assistance with assessments, career development, job searching, and securing the support necessary for sustaining long-term employment.
Entitlement vs. Eligibility – A student with a disability who is receiving special education services is entitled to a free and appropriate public education through the school year in which the student turns 20 years of age or meets the requirements for either a Maine High School Diploma or a Maine High School Certificate of Program Completion.
When a student with a disability turns 21 or has completed the requirements for a HS Diploma or Certificate of Program Completion, that student is no longer entitled to services. The burden of receiving services shifts to the young adult. After graduation, a young adult must apply for services to see if he/she is eligible to receive them.
To be eligible for services a person must first meet MaineCare eligibility requirements based on income and other financial considerations. Second, a person must meet eligibility requirements based on specific categories of diagnosis and criteria for functional and adaptive skills.
Once a person is determined eligible for the waiver, he/she can only receive services if there is a funded opening or slot. Access to services depends on current state waiver funding.
Maine is not required to provide support services to any adult on the basis of prior entitlement to special education or prior eligibility for other support services.
Home and Community Based Services (HCBS) – States develop and operate their own HCBS programs based on state needs, priorities, and legislative direction. In Maine, HCBS services are offered through two waiver programs: the Community Support Waiver (Section 29) and the Comprehensive Waiver (Section 21).
Individual Service Plan (ISP) – An individual service plan (ISP) is a plan developed specifically for one individual. It determines the support services that are needed to help a person function as independently as possible.
Job Coach – A direct support professional (DSP) with specialized training who provides the support an individual needs to keep a job in the community. An individual may need the Job Coach for a limited time or on a long-term basis.
Job Development – This service is designed to match qualified individuals with prospective employers. It provides training and support to individuals and assists them in finding and retaining competitive employment. Job development services target certain jobs/industries/sites that align with an individual’s expectations, skills, and abilities. Typically, an employment specialist provides the job development service.
MaineCare – MaineCareis Maine’s Medicaid program. MaineCare is the primary source of funding for Home and Community Based Services (HCBS), which help people with intellectual disabilities and autism live in their communities.
Medicaid – Medicaid is the nation’s primary public health insurance program for people with low income and/or disabilities. States design and administer their own Medicaid programs within federal requirements, and states and the federal government finance the program jointly. Medicaid is not transferrable between states.
Office of Aging and Disability Services (OADS) – OADS is a division of the Department of Health and Human Services (DHHS). The department relies on MaineCare funding to make Home and Community Based Services (HCBS) available to eligible consumers. HCBS services are offered through two waiver programs: the Community Support Waiver and the Comprehensive Waiver. These waiver programs are summarized in Section 29 and Section 21 of the MaineCare Benefits Manual.
Person Centered Plan (PCP) – This term refers to a number of approaches that assist an individual and his/her family in considering what is important about his/her life, both in the present and future.
Section 29 – The Community Support Waiver program is often referred to as Section 29 as it is summarized in Section 29 of the MaineCare Benefits Manual.
Supported Employment – This service allows an individual to maintain a regular job in the community with ongoing supports. It is designed for persons who, because of a significant disability, are expected to need supports for as long as they remain employed. The amount of support an individual receives on a daily or weekly basis depends on the individual's particular needs.
Waiver – A waiver provides home and community based services to people who otherwise would need to be cared for in institutional settings such as hospitals. In accepting waiver services, one is waiving or forfeiting the right to be served in an institution.