Chapter 6: Keeping the Family Together: Services and Supports for Children

(6.1) What does the Lanterman Act say about services that help children live at home with their families?

The Lanterman Act says that helping children under 18 stay in their family home is a high priority. The Lanterman Act recognizes that most children under 18 have more chances for educational and social growth if they live with their families. The law says it is important to develop and expand services for families with children with developmental disabilities.[[Section 4685(a).]]

The law says that regional centers must use “creative and innovative ways” to meet the family’s needs so the child can live at home.[[Sections 4685(c)(2) and 4648(a)(2) and (10).]] The law also says it is important to respect and support the family’s decisions.[[Section 4685(b)(1).]] Regional centers must consider every possible way to help families keep their children at home, if living at home is best for the child, before considering options where the child would leave the family home. [[Section 4685(c)(2).]] If the regional center finds out that out-of-home placement is being considered by a family, it must promptly meet with the child’s family to figure out how to keep the family together.[[Section 4685(c)(2). ]]

(6.2) What must regional centers do to meet the needs of children with developmental disabilities and their families?

The regional center must be flexible, creative, and innovative in meeting the unique needs of the child and family. If your child is receiving regional center services, the regional center must consider your child’s individual needs. This means the regional center:

• does not have to do things in a certain way
• does not have to do something the same way as in the past, or the same way other regional centers do it
• can create new and different ways to provide services[[Sections 4651, 4685(c)(2), and 4648(a)(2) and (e)(3).]]

The regional center should work with your family to find a solution that works for everyone. For example, if the regional center cannot find a vendor to provide respite services for your child, but you (parent or guardian) find someone, the regional center can be flexible and hire that person. But, if the regional center can meet your needs with a vendor the regional center already has, then you probably cannot get a specific person to provide that service.

(6.3) How do I ask for new services or change to the services for my child?

Your child’s regional center services and supports are decided by the Individual Program Plan (IPP) process. If your child needs more or different supports and services to live at home, your child needs a new IPP. To change your child’s IPP, request an IPP meeting and tell the regional center your child needs more support. As soon as the regional center learns your family needs more services to keep the child at home, it must meet with you to discuss the situation. Tell the service coordinator about your issues and what you need to maintain your child at home.[[Section 4685(c)(2).]]

(6.4) How does the Individual Program Plan (IPP) process involve families?

Your child’s IPP should include a “family plan component” that talks about the services and supports your child needs to stay in the family home.[[Section 4685(c)(2).]] Your child can only get the services listed in their IPP. You can request an IPP meeting for your child at any time, and the meeting must take place within 30 days of your request. You can get an IPP meeting in seven days if your child’s health or safety or placement in your home is threatened.[[Section 4646.5(b).]] This is sometimes called an “emergency IPP meeting.”

IPP goals are created by looking at your child’s strengths, preferences, and needs, and the needs of your whole family, and must include information from you.[[Section 4646.5(a)(1).]] The IPP must have time-limited, measurable objectives under each goal. These goals and objectives should make sure your child has a chance to be part of community life.[[Section 4646.5(a)(2).]] IPPs must follow the requirements of Section 4685 of the Lanterman Act, which places a high priority on children living with their families.[[Section 4646.5(a)(3).]] The IPP must contain a schedule of services provided, when the services will start, and who will provide them.[[Section 4646.5(a)(5).]]

At the end of the IPP meeting, the regional center must give you a list of services and supports you both agreed to in the meeting.[[Section 4646(g)]] The list must say: 

• when services may start,
• how often you will have the services and how long they will last, and
• the provider of services (if known). 

You would need to sign the list of agreed-upon services and supports before they start. The regional center needs to give you these either in writing or electronically. The list must also be in your native language. If you disagree with services at the IPP meeting, you can delay getting the list of supports and services until you agree. The regional center must hold another IPP meeting within 15 days (or later, if you want), to reach a final agreement. At that time, the regional center has to give you a list of supports and services in your native language.[[4646(h)]]

If you do not think the IPP proposed by the regional center will enable your child to live at home, you can ask for a hearing.[[Section 4685(c)(4).]] For more information on hearings, see Chapter 10.

After you sign your child’s IPP, the regional center must make sure your child gets all the services in the IPP.[[Section 4646(g); see also Assoc. for Retarded Citizens v. DDS (1985) 38 Cal.3d 385, 390.]] If necessary to make sure there are no gaps in services, the state Department of Developmental Services may have to provide services.[[Section 4648(h).]] If a child needs specialized services, the regional center can pay outside providers (called “vendors”). They may pay the vendors directly or give you vouchers to pay the vendors.[[Section 4648(a)(3)-(5).]] Before paying for services, the regional center must make sure there are no other funding sources responsible for meeting the child’s and family’s needs. These other sources are called “generic services” and “natural supports.”[[Sections 4646.5(a)(5) and 4659.]]

(6.5) What are Generic Services?

Generic services are services that a public agency is responsible for providing to members of the general public and with public money.[[Section 4644(b).]] Another part of the Lanterman Act adds private insurance and managed health care plan coverage to the list of generic services.[[Section 4659(c).]] The law says a regional center client must use generic services before using its money to buy the same services.[[Sections 4648(a)(8) and 4659.]]

Examples of generic services are school district, Medi-Cal, In-Home Supportive Services (IHSS) through the county, and California Children’s Services (CCS). If your child is eligible for these generic services but you choose not to apply for them, the regional center cannot purchase the services these agencies would provide for your child.[[Section 4659(c). ]] If your child or family does not meet the criteria for the generic services above, then the regional center can purchase these services.

At your child’s IPP meeting, ask the regional center to help you advocate for generic services. That way, you will not be the only one responsible for getting them. If you request it, the regional center must help you get generic services.[[Section 4659(d)(2).]] If you have trouble getting the services, ask the regional center to advocate for your child with the public agency, insurance company, or managed health care plan.[[Section 4648(b).]] For more about how to get the regional center to advocate for you, see Chapter 10.

(6.6) How do In-Home Supportive Services work as a generic resource?

In-Home Supportive Services (IHSS) are a generic service. The regional center cannot pay for services available through IHSS when your child meets the criteria but you don’t apply for it. The regional center executive director may make an exception to the rule and pay for services even if you don’t apply for IHSS, if there is an “extraordinary circumstance” and it is documented in your child’s IPP.[[Section 4689.05.]] The regional center can pay for supportive services between the time you apply for IHSS and the time it is approved. This is because, until IHSS services are approved and begin, they are not an available resource to meet your needs. The rate that the regional center pays for these services cannot be greater than the IHSS hourly rate for your county. In addition, regional centers cannot purchase supported living services that are the same as or similar to IHSS to replace IHSS.

(6.7) How do natural supports work as a generic resource?

Natural supports are people like family members, friends, students, coworkers, and other community-made relationships already in a child’s life that can help them meet IPP goals.[[Sections 4512(e) and 4646.5(a)(5).]] Natural supports for children are typically parents and family who can help them. The family support services that regional centers provide are supposed to recognize and build on the natural supports children have in their lives.[[Section 4685(b)(3).]] To expand the availability of services, regional centers may use natural supports.[[Section 4648(e)(3).]] In developing a child’s IPP, the regional center service coordinator will explore the child’s natural supports who are able and willing to provide some IPP services. A regional center will likely consider a child’s parents to naturally provide services and supports similar to those the parents would provide for a child of the same age without a disability.[[Section 4646.4(a)(4).]]

(6.8) Can regional centers pay for medical or dental services?

The Lanterman Act says regional centers can pay for these services for children over age three in only a few situations:

• You tried to get the services from Medi-Cal or insurance, they denied the services, and you are not likely to succeed in an appeal
• You are trying to get Medi-Cal or insurance to cover them, and Medi-Cal or insurance has not denied them yet
• If Medi-Cal or insurance denied, and you appealed, the regional center can pay for the services during the appeal process.
• You applied for Medi-Cal or insurance coverage, but coverage has not yet started.[[Section 4659(d)(1).]]

(6.9) If a regional center will pay for services, must it always use the least costly service provider?

When selecting a provider, the Lanterman Act says the IPP team must consider:

• The provider’s ability to deliver quality services and meet the IPP objectives, and
• The cost of providing services or supports of comparable quality by different providers.[[Section 4648(a)(6).]]

The law says regional centers must use the least costly available provider, with transportation costs, who can fulfill your child’s IPP needs. However, the least costly provider must be able to meet any particular needs described in the IPP. But, if there is a less costly provider, your child won’t have to change to that provider if it would cause a more restrictive or less integrated setting.[[Section 4648(a)(6)(D).]] Service providers that receive federal money to provide services may be less costly than those that do not. Regional centers must also consider this when selecting a provider.[[Section 4648(a)(6)(D). ]]

If your child’s regional center wants to change to the least costly provider, it must either hold an IPP meeting and you agree with the change or give you a written notice of the proposed change.[[Section 4646.4(h).]] If they want to reduce, stop, or change service in your child’s IPP, they must give you a 30-day notice first.[[Section 4710(a).]]

Finally, regional centers cannot purchase experimental treatments or therapeutic services or devices not clinically or scientifically proven effective or safe, or where risks and problems are unknown. Experimental treatments or therapeutic services include experimental medical or nutritional therapy when the use of the product for that purpose is not a general physician practice.[[Section 4648(a)(16).]]

(6.10) Besides the Lanterman Act, do other laws require services for children with disabilities that might help them live at home?

For children under age three, federal law (the Individuals with Disabilities Education Act or IDEA) provides early intervention services. In California, these are called Early Start services.[[Title 20 U.S. Code beginning at section 1431.]] California selected the regional centers to be the primary coordinators and providers of these services.[[Cal. Gov. Code beginning at section 95000.]] Instead of an IPP, services for children under three are provided under an Individual Family Service Plan (IFSP). Children who receive early intervention services can also get Lanterman Act services if they have a developmental disability. But, most services children for children under three are through an IFSP. For more information on developmental disabilities that qualify for regional center services, see Chapter 2.

When they turn three, children eligible for special education can also get special education services from their local school district. At age two and a half, the regional center must plan for the child’s transition to the school district.[[Cal. Education Code section 56426.(a) and (b) and Title 17 Cal. Code Regs. section 52112.]] If your child has a developmental disability and is eligible for regional center services at age three, the regional center may continue services until the next school term begins if they turn three when school is not in session.[[Title 17 Cal. Code of Regs. section 52112(f).]]

If you have a child under three, please read Special Education Rights and Responsibilities (SERR) Chapter 12 for information on early intervention services. For information on how children over age three qualify for special education, see Chapter 3 of SERR.

(6.11) Can parents with developmental disabilities get services from the regional center to help them parent their children?

If you (the parent or guardian) have a developmental disability, you can get parenting skills training from the regional center. You can get services that can help you keep your child in your home.[[Section 4687.]] If your child also has an IPP or IFSP, your IPP will be separate from your child’s. Make sure that your IPP and your child’s IPP or IFSP work together. These plans do not need to be written at the same time or in the same way. Parents should write their IPP separately from their child’s IPP or IFSP. That way, your child’s service coordinator can focus on your child’s needs independently from you and your own needs. Bring a copy of your child’s IPP or IFSP to your IPP meeting. This will help you make sure your services work together.

You can also get help from parenting-skills agencies like Through the Looking Glass. Through the Looking Glass is a national organization that supports parents with disabilities. They can give you ideas about what you may need. Their website is www.lookingglass.org/ or call (800) 644-2666.

(6.12) Will a family’s culture, values, and customs be considered in providing services that help families keep their children with disabilities at home?

Family support services must meet the cultural preferences, values, and lifestyles of families.[[Sections 4685(b)(4), 4502.1, and 4646.5(a)(1).]] If you (the parent or guardian) want the regional center to respect your culture, tell them about your cultural values and customs. Be specific, so the regional center can understand the importance to you and your child. Give your child’s service coordinator information that will help them consider your child’s background. Bring this up at your child’s IPP meeting, and ask for specific cultural preferences to be included in your child’s IPP.

(6.13) What if I do not speak English or English is not my first language?

Regional centers must respect the language needs of your child and family.[[Section 4502.1(b).]] Good communication is essential. If you (the child’s parent or guardian) do not speak or understand English, or are more comfortable speaking a different language, tell the regional center at the first intake meeting.

If you need an interpreter, tell the regional center as soon as possible. You can have an interpreter at every meeting, including your child’s intake meeting and phone calls.[[Section 4646(j)(1).]] You can also bring a friend or family member who speaks English to help you and your child. But, the regional center cannot make you bring someone to get out of hiring an interpreter. If you need an interpreter to appeal a regional center decision, the regional center must hire and pay for an interpreter at the informal meeting to try to resolve the dispute.[[Section 4710.8(c).]]

You also have the right to have your child’s IPP (and other documents) translated.[[Section 4646(j)(2).]] If the regional center will not translate your child’s documents or provide an interpreter, call Disability Rights California.

(6.14) What if the regional center is not offering all the services our family needs for our child to live at home?

It is your right to appeal a regional center decision that denies your child a service they need. If the regional center disagrees that your child needs a service, it does not mean they are trying to hurt your child. If you appeal, it does not mean you are asking for more than your child needs. It just means you do not agree with the regional center on what your child needs.

In an appeal, each side gives information to an administrative law judge about what they believe the child needs to meet the goals of the IPP. The judge makes the final decision. If you go through an appeal, just tell the truth when you present your child’s case. The judge will look at the facts, testimony, and documents and use the law (mostly the Lanterman Act) to decide the case. Even if your child loses the appeal, the regional center cannot retaliate, punish your child, or take away your child’s services because you appealed.

For more about appeals, see Chapter 10.

(6.15) What Family Support Services can regional centers give to help families care for their children at home?

Here are some services and supports your child can get:

• Respite for caregivers, either in or out of the home
• Day Care
• Diapers
• Emergency and crisis intervention
• Special training for parents of children with developmental disabilities and parents with developmental disabilities
• Adaptive equipment like wheelchairs and hospital beds
• Advocacy (including training to advocate for yourself), facilitation, peer advocates, and help getting welfare, educational services, and public benefits like
  • California Children’s Services (CCS)
  • In-Home Supportive Services (IHSS)
  • Supplemental Security Income (SSI)
  • Medi-Cal
• Behavior training and behavior modification programs
• Camping
• Communication devices and other appliances and supplies you need
• Community integration services
• Counseling
• Facilitating circles of support
• Early intervention programs, like infant stimulation
• Mental health services
• Social skills training
• Specialized medical and dental care
• Transportation to make sure people with developmental disabilities get their services[[Section 4512(b).]]

(6.16) Are there special rules or requirements for certain regional center services?

Parents should know about parts of the Lanterman Act about services children with disabilities often need.

Transportation Services

For a minor child living with his or her family, the regional center will pay for transportation only when the family cannot provide transportation. If you need the regional center to pay for transportation, provide written information, such as a brief letter, to the regional center explaining why.[[Section 4648.35(d).]]

Diapers

The regional center may pay for diapers for children with developmental disabilities three years and older. A regional center may pay for diapers for children under three years old if a family can show it is necessary for the child to continue living at home.[[Section 4685(c)(7).]]

Behavioral Services and ABA

Behavioral services or ABA (Applied Behavioral Analysis) are sometimes funded by regional centers. The law requires you to use Medi-Cal, private insurance, and school funding for behavioral services before the regional center will pay. Talk with your service coordinator about how to get behavioral services for your child from Medi-Cal, private insurance, school, or the regional center. See Disability Rights California’s publication Access to ABA Therapy.

(6.17) Can the regional center pay for camp and social recreation services? What about educational services and non-medical therapies?

Yes. As of July 2021, regional centers can pay for:

1. Camping services and associated travel expenses.
2. Social recreation activities, except those activities vendored as community-based day programs.
3. Educational services for children age 3-17 years old.
4. Nonmedical therapies, including (but not limited to) specialized recreation, art, dance, and music.

These services were “suspended” in 2009, meaning regional centers could not pay for them. California had a financial emergency and regional centers had to stop paying for these services.

But the suspension has been lifted after a change in the law. Regional centers can again pay for camp, social recreation services, educational services, and nonmedical therapies.

Camping services can include day camps, overnight camps, and travel. Social recreation services examples are swimming and horseback riding. Educational services are for children 3 to 17 years old. Nonmedical therapies can include specialized recreation, art, dance, and music. To ask the regional center to fund any of these services, ask for an IPP meeting to talk about your needs and goals.

(6.18) What does the Department of Developmental Services say about the restoration of camp, social recreation, and related services?

The Department of Developmental Services is the state agency in charge of all 21 regional centers. This agency is sometimes called DDS and it has the power to tell regional centers what to do. One way DDS tells regional centers what to do is by sending orders and instructions, called “directives.”

In a letter on October 7, 2021, DDS told each regional center that they must tell service coordinators and the public about this change in the law. They also must find regional center consumers who may need and want these services. DDS told regional centers they must make special efforts to tell communities of color who do not speak English. Paying for social recreation and other related services can help reduce regional center spending disparities for low-income people of color.

You can find this directive on DDS’s website at: https://www.dds.ca.gov/wp-content/uploads/2021/10/Restoration-of-Camping-Social-Recreation-and-Other-Services.pdf

(6.19): How do regional centers decide who gets services like camp, social recreation, nonmedical therapies, and education?

Your IPP must explain why you need these services. When regional centers make decisions on what services to approve, they consider these questions:

1. Do you need the service because of your developmental disability?
2. Will the service lessen the effects of the developmental disability?
3. Will the service help you have a normal, independent, and productive life, or help you learn a new skill in an appropriate way?

Regional centers also have guidelines called Purchase of Service Policies that explain how they make spending decisions for different services. Purchase of Services Policies help explain the rules for receiving services. But POS policies cannot violate the Lanterman Act.

POS policies for each regional center are different and DDS must approve POS policies. [[Welfare & Institutions Code section 4434(d). ]] Ask your regional center to review their Purchase of Service policy about camping, social recreation, and related services. Each regional center must put their Purchase of Service policies on their website.

(6.20): Do I have to use up or try other resources before the regional center will fund my social recreation program?

Yes. The law says regional centers must make sure there are no other agencies or resources with the duty to provide the service you are asking for. This is called “exhausting generic resources.” 

A “generic resource” is an agency or resource required to serve all members of the general public, whether or not they are regional center clients. Examples of generic resources include city parks and recreation programs, schools, and Medi-Cal.[[Welfare and Institutions Code, section 4644(b).]]

The law also lets regional centers fund a service while you are trying to get the generic resource.[[Welfare and Institutions Code, section 4659.]]

(6.21): How do I ask for social recreation, camp, nonmedical therapies, or educational services from the regional center?

To get social recreational services funded, your IPP must include social recreational goals. The same is true for camp, nonmedical therapies, and education services. There must be a related goal.

Ask for an IPP meeting to talk with the regional center about how you are doing and why you need the new service or support. You can ask for an IPP meeting at any time. The regional center must hold your meeting within 30 days of your request.

Regional centers can only purchase services that are related to your developmental disability. When asking for your service, be sure to explain why you need the service and how it is related to your developmental disability.

For more about the IPP process, see Chapter 4.

Other tips:

• Be ready to explain how social recreation and other related services help you with your developmental disability. Say why that program meets your individual needs.
• Review your IPP to see what your goals are, and how the goals should be changed to show your need for social recreation and other services.
• Review your regional center’s purchase of service policy for camping, social recreation, and other related services. Since the law has changed, regional centers updated their social recreation policies. 
• Know what generic resources or agencies in your community could meet your social recreation needs. For example, community programs (like city parks and recreation programs), school programs or clubs, and other events available to the generic public. 
• Even if a generic resource can provide the social recreational services you need, regional centers must help you access those generic resources. [[Welfare and Institutions Code, section 4648(a)(8).]]
• Be ready to tell your service coordinator if you need extra supports to be a part of community programs and services.
• If you are a parent of a child under 18, be ready to explain if you cannot pay part of the social recreation or related service – even the cost you would pay if your child did not have a disability.

(6.22): What if the regional center says “No” to my request for social recreation or other related services?

If the regional center says no, they must give you written notice by certified mail within 5 working days. It is illegal for the regional center to deny or change a service without giving you written notice. The regional center notice must tell you what they plan to do, and which laws allow them to make that decision. It must explain your appeal rights. The regional center written notice must be clear and in a language you understand.

However, even if the regional center refuses to send you a notice, you can still appeal.[[Welfare and Institutions Code, section 4710(b).]]

For more information on how to appeal, please see Chapter 10.

(6.23) Are respite services available to families to help them keep their children with disabilities at home?

Respite allows families to have a break from directly caring and supporting a person with a developmental disability. Regional centers pay a respite worker to be with the person with a developmental disability so the family members can have a break.[[Section 4690.2.]] A “family member” is someone who lives with a person with a developmental disability and who is responsible for their 24-hour care and supervision.[[Title 17 Cal. Code Regs. section 54302(a)(29).]] Respite is at no cost to families unless they are subject to the cost participation program described above.

When a respite worker comes to provide care for your child, you can leave the house, spend time with family and friends, or take a nap. You do not have to leave the house, but you need to take a break from providing care for your child.

If you are sick, on a vacation, or you need to travel for business, then the regional center can pay for short-term out-of-home care for your child.[[Section 4212(b).]]

(6.24) Are facilities that care for children with developmental disabilities or foster family homes able to get respite care hours?

Licensed or certified residential care facilities or foster family homes that already get money to provide care and supervision to people with disabilities are not eligible for respite services.[[Title 17 Cal. Code Regs. Section 54302(a)(29).]] But, a relative foster parent who is not receiving money for acting as a foster parent could get respite services.

(6.25) How does a regional center decide how much respite service is needed?

The goals of respite are to:

• help the family maintain the child at home
• provide safe care and supervision in the absence of the family members
• relieve the family of the constantly demanding responsibility of care
• attend to the child’s basic needs and activities normally provided by family members during those hours.[[Section 4690.2(a).]]

The number of respite hours you need will depend on your family’s situation. You may need more hours if necessary to keep your child living at home.

(6.26) What if we need more respite hours than what the regional thinks our family needs?

If you need more hours than the regional center offers, you have to explain why. Write out your weekly schedule and bring it to an IPP meeting. Include all the activities of your personal lives and the time you spend caring for your child. Note the time that is left over.

You can ask for respite for errands, activities with your other children, church, or free time. List the behaviors or medical needs (and their frequency and how much time they involve) that your child has that require your full attention. List your own needs.

(6.27) What if the regional center and I cannot agree on the amount of respite services our family needs?

If the regional center will not give you the hours you need, you can appeal the regional center’s decision. Use the Respite Hearing Packet to help you prepare. You must show the judge why you need more respite.

Once you file for an appeal, prepare the evidence that shows you need more respite. You need proof of:

• the kind of care your child needs,
• how often someone must be with your child, and
• what a typical week of care and supervision of your child looks like.

You and other family members who take care of your child should go to the hearing and describe to the judge the care and supervision your child needs. Describe how much of each week your child needs that kind of attention. Describe what school, work, or other necessary obligations and activities you must dedicate time to each week. If the time needed to care for your child, plus the time you need for your other obligations and activities, leaves little or no personal leisure time, it is hard to keep that up. It could threaten your ability to maintain the child at home. In this situation, more respite is probably needed to accomplish this important goal of the Lanterman Act.

If one or more family members cannot attend the hearing, they should write statements to the judge and declare that they are true and accurate under penalty of perjury and the laws of the State of California.

(6.28) How do I choose a respite care worker?

If you do not have one or more people in mind to provide respite, regional centers usually have a list of approved respite agency “vendors.” These agencies hire, train, and supervise respite workers to provide these services for families. You or another family member can become a “vendor” of the regional center so you can hire a respite worker. To do this, you must get a “voucher” from the regional center. Then you can hire someone and bill the regional center. If you hire a respite worker, you must train, monitor, and pay them through a Financial Management Service (FMS) provider.[[Sections 4685.7, 4685.8, and 4688.21.]] An FMS is your co-employer of the respite worker you hire. The regional center can give you information about FMS providers in your area.

A regional center vendor can often hire the respite worker you choose for your child. This way your child gets respite services from someone you are comfortable with, and the vendor handles all the details of paying the worker and billing the regional center.

(6.29) How does a family member become a Family Member Vendor of the regional center for respite services?

To be a family member vendor, you must:

• Be a family member
• Not be the direct provider of the respite services yourself
• Make sure any respite worker you hire is 18 years old, unless they are currently providing respite and are within 90 days of turning 18
• Make sure that any respite worker you hire has the skills, training, or education needed to provide respite for your child, knows your child’s routines needs, and is trained in any special supports necessary[[Title 17 Cal. Code Regs. section 54355(g)(4).]]
• Complete the Home and Community-Based Services Provider Agreement[[Title 17 Cal. Code Regs. section 54310(g).]]
• Use the Respite Services Billing Form DS 1811 to submit requests for reimbursement.[[Title 17 Cal. Code Regs. section 54355(b)(4).]] You (as family member vendor) and the respite worker must sign the form
• Keep records, including:
  • dates and times of respite services (start and end times)
  • address where the service was provided, and
  • date of birth, social security number,[[If a worker does not have a social security number, the vendor can accept a copy of any document that the federal government accepts to prove identity and employment eligibility. The family member vendor must compare the copy to the original. And the worker must declare under penalty of perjury that the copy is true and correct.]] address and phone number of the respite worker[[Title 17 Cal. Code Regs. section 50604(d)(3)(D)&(E).]] (also on billing Form DS 1811).
• Keep records of respite services for five years.[[Title 17 Cal. Code Regs. section 54355(b)(3).]] The regional center can audit family member vendors. If you do not have the required records, you may have to pay the regional center back.

(6.30) Can respite providers be trained to address special medical needs of a person with a disability during respite service hours?

If they are trained by health care professionals, in-home respite workers can perform incidental medical services, including:

• Colostomy and ileostomy services: changing bags and cleaning stoma site
• Urinary catheter services: emptying and changing bags, and care of catheter site
• Gastrostomy services: feeding, hydration, cleaning stoma, and adding routine medications ordered by a health care professional

These respite providers must also be trained in first aid and CPR and they must receive continuing education in these skills. Respite providers who perform incidental medical services can receive slightly more pay. Also, regional centers can reimburse respite service agencies for the additional training required for these providers.[[Section 4686.]]

(6.31) How do respite services work together with In-Home Supportive Services provided by the county?

In Home Supportive Services (IHSS) is a generic service.[[Section 4648(a)(8).]] IHSS providers and respite providers provide different services. For instance:

• IHSS: The county pays someone to care for your child’s needs, like bathing, feeding, and protective supervision.[[Welfare and Institutions Code section 12300 and following.]] IHSS workers only do what is listed on the IHSS worksheet. You must apply for IHSS for your child. Your child must meet certain requirements to be eligible. For children receiving IHSS, the county often determines the parent to be the most suitable IHSS provider.
• Respite Care: The regional center pays for respite care. Respite gives you and other family members a break from caring for your child. You leave your child with a respite worker responsible for meeting all of your child’s needs, not just what is listed on a worksheet.

Sometimes the respite worker and IHSS worker do the same things. A regional center cannot pay for services that duplicate the services provided by IHSS. But, if a child’s need for a service from IHSS is more than the number of hours of that service available from IHSS, a regional center can pay for the additional services.[[Timothy S. v. Frank D. Lanterman Regional Center, OAH Case no. 2012050727, p. 49.]] For IHSS, the state says regional center services cannot be counted by the IHSS program as an alternate resource for purposes of IHSS service eligibility.[[Regional center services cannot be counted by the IHSS program as an alternate resource. See DSS All County Letter No. 98-53.]]

If your regional center will not give you respite until your child gets IHSS, call Disability Rights California for help.

(6.32) Can regional centers ask families to trade respite services for other regional center services that also give families a break from the responsibility of care?

Some regional centers ask parents or guardians of a child with a disability to “trade” respite hours for other services, like socialization training or socialization groups. However, this limits the services your child receives. Respite hours give you and other family members a break from caring for your child. A child’s need for socialization is unrelated to the family’s need for a break from the responsibility of care and supervision. The regional center must consider each need independently and individually.

(6.33) Are respite and daycare the same service?

Respite and day care are separate services. Day care is only meant to help you go to work, school, or training. Respite is supposed to give you a break from caring for your child. This allows you to have time for other things like chores, caring for other children, meeting friends or family, leisure activities, or resting. Respite is being relieved from the responsibility of care when you are doing activities other than work or school.

You can ask for both respite and daycare if you need these services to care for your child at home. Daycare takes care of your child while you go to work, school, or participate in training. Respite gives you a break from caring for your child so you can relax, visit friends, or take a vacation. Actually, you may be more in need of respite if you go from work to caring for your child, and back to work.

Explain to the regional center why and when you need both daycare and respite. Both services may help you meet the overall IPP goal of having your child live at home. Daycare enables you to work or go to school, while respite enables you to have a break from the constant responsibility of care and supervision. In both cases, the regional center must help you find providers who can care for your child fully.

(6.34) Can a regional center or another agency help pay for the costs of daycare for a child with a developmental disability?

If daycare for your child with disabilities costs more than daycare for children without disabilities, the regional center can pay the difference.[[Section 4685(c)(6).]]

Even if you don’t qualify for day care from your regional center, there are day care subsidies that can help. Ask your local childcare resource and referral agency for help. To find the agency that helps people in your county, contact the California Child Care Resource Network at www.rrnetwork.org or call (800) 543-7793.

If your child is under 18 and does not get full-scope Medi-Cal, you may have to pay part of the cost of daycare as part of the Family Cost Participation Program. For more about this, see Question 41.

(6.35) Must day care providers make reasonable modifications to provide care for children with developmental disabilities?

Children should be included in community day care programs whenever possible. The Americans with Disabilities Act (ADA) says that day care providers cannot discriminate against children with disabilities. They must make “reasonable modifications” (changes) to the program, like extra aids and services, so children with disabilities can participate. But, if the changes or extra services you need create an “undue hardship” or cause a “fundamental change in the program,” the program does not have to provide the extra services.[[Title 42 U.S. Code section 12182(b)(2)(A)(ii) and (iii).]]

In that case, you can get the extra help you need from the regional center. For example, if the day care program says your child must have a one-to-one aide, and that would fundamentally change the program, the regional center should pay for the aide. The regional center can also advise and train the day care staff.

Get a letter from the program that explains the support your child needs at day care. Or, ask a day care staff member to go to your IPP meeting with you. In this way, the IPP can be written to include your child’s need for extra support while in day care and the regional center’s role.

If you have trouble getting the help you need, call Disability Rights California. You can also call the Child Care Law Center at (415) 558-8005.

(6.36) How does my child’s special education program and the regional center work together?

The regional center must make sure your child gets the services they need to meet IPP goals, even if your child is in school. Schools must provide many services to make sure students with disabilities get a free appropriate public education (FAPE). So, many of your child’s services come from the school district during their school-age years.

But children with developmental disabilities rarely get all their services from their school. They have needs not related to education or that only come up when they are at home. These are service needs which regional centers may be responsible for. Examples of regional center services your child may need besides their special education programs include:

• Socialization Programs. Your child may need an after-school program to develop social skills if they have socialization goals in their IPP that special education services are not meeting. A socialization program may be essential to helping your child develop skills needed to interact well with people in the community. Your child may learn how to start a new conversation, how to walk through the grocery store, and how to do things not taught in a school setting.
• Communication Services. These can be communication devices your child uses when they are not in school and which the school does not permit the student to take home. It can also be training for you on how to use communication equipment that the regional center provides in your home.
• Respite (see respite sections above).
• Behavioral Supports. Even if your child gets behavioral services at school, your child may need additional services at home. School services may address your child’s behavioral needs in a structured classroom. When your child is home, they may need behavioral help to deal with the less rigid structure of a family during the evenings, weekends, and school breaks.
• After school day care (see day care sections above).

(6.37) Is the regional center involved in the transition of special education students from school to post-school life?

The regional center must work with the child and family to ensure a smooth transition out of the public school system. You and your child need to decide what to do next and what the IPP needs to include to reach your child’s adult-living goals. But, students 18-22 years old who have not received a regular diploma or certificate of completion from their school district may still need to use special education services. Because the school district is still a generic resource for transition services for these older students, the law says regional centers cannot pay for certain services unless those offered by the school district are not an appropriate substitute. These services are:

• Day programs,
• Vocational education,
• Work services,
• Independent living programs, or
• Mobility training and related transportation services.[[Section 4648.55.]]

See Chapter 9 to learn more about the transition process and how to get the services listed above for people who are 18-22 years old.

(6.38) Can regional centers provide emergency or crisis intervention services?

The Lanterman Act says regional centers can provide emergency and crisis intervention services to help a person stay in the family home. These services include mental health and behavior modification services provided in the family home. If services are unsuccessful, the regional center must provide emergency housing in the person’s community. If the person must move to another community, the regional center must try to return them to their home with all the supports they need as soon as possible.[[Section 4648(a)(10).]]

There are several children’s crisis homes in California that offer intensive behavioral supports. These homes help children manage their behavior so they can go home. The Regional Resource Development Projects (RRDPs) usually refer children to these homes.

If your child has a psychiatric disability and gets full-scope Medi-Cal, your child can also get Therapeutic Behavioral Services (TBS). TBS are one-to-one services that help you and your child learn new ways to control problem behavior and increase behaviors that allow your child to succeed.

(6.39) Can regional centers provide nursing care?

If your child needs nursing care in your home and it could be provided by Medi-Cal, Medicare, CHAMPUS[[The Civilian Health and Medical Program for Uniform Services]], In-Home Supportive Services, California Children’s Services, or insurance, the regional center cannot pay for nursing care if you choose not to pursue that coverage.[[Section 4659.]] Families may prefer to get nursing care through the regional center, but they must use available generic resources first. Many families use a combination of sources to pay for their child’s nursing care. Most private insurance companies have lifetime limits on services. Nursing care can be very expensive and quickly reach the lifetime limit. If your child is eligible for Medi-Cal directly, or through a Waiver, Medi-Cal can provide nursing care for your child in your home.

(6.40) How do the Adoption Assistance Program (AAP) and the regional center serve children with developmental disabilities?

AAP is a federal program[[See Title 42 U.S. Code section 670 and following and Title 45 Code of Fed. Regs sections 1356.40 and 1356.41.]] implemented by the states[[See California Welfare & Institutions Code section 16115.5 and following and Title 22 Cal. Code Regs. section 35000 and following.]] that encourages people to adopt children in foster care, or who are likely to end up in foster care. The program offers financial incentives to the adoptive family.

You have to meet three requirements to be eligible for AAP:

1. The child must be under age 18 (or under age 21 if the child has a mental or physical disability and still needs help).
2. The child is not likely to be adopted without financial help because of age, disability, brothers and sisters that need to stay together, race, ethnicity, or color.
3. The courts must be involved and have determined that the adoption is in the best interest of the child.[[Welfare & Institutions Code section 16120.]]

International and independent adoptions are not eligible for AAP. Children who receive services from a regional center and who also receive AAP benefits are called “dual agency children.” Dual agency children require care and supervision beyond that provided to other children in foster care.[[Welfare and Institutions Code section 11464(a)(1).]] Children who receive AAP benefits still have a right to regional center services under the under the Lanterman Act.[[Section 4684.]] Regional centers sometimes try to say that the AAP money should pay for services like respite or behavioral services. But, administrative hearings have repeatedly found that AAP funds are not a generic resource and do not have to be used to pay for regional center services.[[Cases that found that AAP is not a generic resource include: L.H. v. Valley Mountain Regional Center, OAH Case No. 2002080370, Rebecca K. v. Regional Center of the East Bay, OAH Case No. 2000030471, Breanna W. v. San Andreas Regional Center, OAH Case No.2000120046, T.S., C.S., and J.S. v. San Gabriel/Pomona Regional Center, OAH Case Nos. 2003050412, 2003050413, and 2003050414, and Jareth S. and Candace S. v. North Los Angeles County Regional Center, OAH Case Nos. 2000010339 and 2000010340.]]

If you are considering adopting a child with a developmental disability, contact Disability Rights California for information on how to access the AAP program.

(6.41) Do parents have to pay fees for some regional center services?

Yes. These are fees parents may have to pay:

1. A monthly parental fee

Parents of children under 18, who receive 24-hour-a-day, out-of-home care, may have to pay for some of that care, depending on their income. The fee is based on the current cost of caring for a child at home, using federal government information, adjusted for inflation.[[Section 4784(e).]] The regional center will consider what your family has paid for medical expenses and other expenses, like how much it costs to travel to visit your child.[[Section 4784. See also Cal. Code Regs., tit. 17 §§ 50201-50241. Disability Rights California believes there should be no parental fees when the child is a Medi-Cal recipient and is living in a Medi-Cal-funded placement, such as a nursing facility, an intermediate care facility for people with developmental disabilities, a developmental center, or a community care facility funded under the HCBS Waiver. This is because state and federal Medicaid laws require that the payment made by the Medicaid program – Medi-Cal in California – is to be considered as payment in full. (Cal. Welfare and Institutions Code section 14019.3(d); Title 42 Code of Fed. Regs. Section 447.15.) Parental fees for children who need to live outside the family home to benefit from their education may also be unlawful. Federal special education law provides that “[i]f placement in a public or private residential program is necessary to provide special education and related services to a child with disabilities, the program, including non-medical care and room and board, must be at no cost to the parents of the child.” (Title 34 Code of Fed. Regs. Section 300.104.) If a residential placement is necessary for educational purposes, it must be provided at no cost to the parents.]]

If you disagree with the parental fee, you can appeal. The appeal process for parental fees is different than for services under the Lanterman Act. You must appeal in writing within 30 days of getting the parental fee confirmation letter, to the Director of the Department of Developmental Services, with the reason(s) for the appeal. The Director will issue a written decision within 30 days of getting all needed financial data.[[Section 4784(h).]]

2. Day Care

The law says parents must pay the same amount for day care as they would pay for a child without disabilities. The regional center pays for any costs beyond the cost of typical day care. If the family can show they cannot afford to pay, the regional center can pay the entire cost of day care.[[Section 4685(c)(6).]]

3. Family Cost Participation Program

For respite services, daycare, and camping programs, the Family Cost Participation Program may apply. It requires families to pay a portion of the cost, depending on income.[[Section 4783(c).]] It does not apply to all families. If your child qualifies for Medi-Cal, you do not have to pay any part of the cost.[[Section 4783(a)(1)(E).]] Even if your child qualifies for Medi-Cal without considering family income (called “institutionally deemed”), you do not have to pay any part of the cost. 

You only have to pay for part of respite, daycare, and camping services if:

• your child is between 0 and 17 years old and lives at home,
• your child is not eligible for Medi-Cal,
• your child receives respite, day care, and/or camping services, and
• your family’s gross annual income is at least four times the “federal poverty level.” [[Sections 4783(a)(1)(A)-(E) and 4783(b)(1).]]

If your family meets all these conditions, your share of the cost will be on a sliding scale, between 5% and 80% of the cost. The regional center cannot ask your family to pay for other regional center services listed in your IPP and cannot deny a service you need because your family cannot pay for it. 

After you sign your completed IPP, you have 10 days to give the regional center your income information (an IRS form W-2, last year’s income tax return, payroll stubs, or other acceptable proof of income[[Section 4783(g)(2).]]). The regional center has 10 days to tell you how much you must pay. That amount is called your “cost participation.”[[Section 4783(g)(3).]] If you do not provide income information, you must pay the maximum cost participation.[[Section 4783(g)(4).]] If you have more than one child who gets regional center services, the amount you have to pay is reduced.[[Section 4783(d).]]

There are exceptions. The executive director of each regional center can adjust the family cost participation amount in two situations:

• When families are experiencing “unavoidable and uninsured catastrophic loss” that temporarily limits their ability to pay. This can be natural disasters, accidents, major injuries to immediate family members, or extraordinary medical expenses.[[Title 17, Cal. Code Regs., section 50265(a).]]
• When there would be a “direct economic impact” if the cost were not lowered. This means your family would go without basic needs like food, shelter, clothing, or medical care if you had to pay that amount.[[Title 17, Cal. Code Regs., section 50265(b).]]

You can appeal the cost participation if you believe the regional center is charging you more than it should, they made a calculation mistake, or you disagree with the decision about an exception.

To appeal your cost participation, send a letter to the regional center executive director and describe your disagreement within 30 days of learning your fee amount.[[Section 4783(k)(1).]] If you do not agree with the regional center’s recalculation, you can appeal to the Director of the Department of Developmental Services (DDS). You must appeal within 15 days of receiving the regional center’s decision.[[Section 4783(k)(1). ]]

If you disagree with the executive director’s decision about your family suffering an unavoidable and uninsured catastrophic loss which makes your cost participation impossible, you can appeal to the DDS. You must appeal within 15 days of receiving the regional center’s decision.[[Section 4783(k)(2)&(3).]]

4. Annual Family Program Fee

Your family will have an annual fee if your family’s adjusted gross income is at or above 4 times the federal poverty level, and your child:

• is eligible for regional center services under the Lanterman Act or Early Intervention Services Act,[[For children age 0-2 years, the fee depends on approval by the federal government.]]
• is under 18,
• lives with you (parents),
• gets services beyond needs assessment and service coordination,
• does not get Medi-Cal or Medi-Cal waiver services, and
• gets services besides the 3 under the Family Cost Participation Program (respite, day care, camping).[[Section 4785(a); includes respite, day care, or camping costs.]]

If your adjusted gross income is less than 4 times the federal poverty level, there will be no fee. If your adjusted gross income is 4 - 8 times the federal poverty level, the fee is $150 per year.[[Section 4785(b).]] If your adjusted gross income is more than 8 times the federal poverty level, the fee is $200 for the year.

Keep in mind:

1. These fees are per family, no matter the number of regional center clients in the family.
2. Total adjusted gross family income means all income from both parents (even if living separately - unless a court order says otherwise). It also includes the community property portion of a stepparent’s income.
3. If regional center cannot get a noncustodial parent’s income, the income will not be included.[[Section 4785(j).]]

A regional center may grant an exemption to having to pay the annual family program fee if you show:

1. You need it to keep your child at home;
2. You have an extraordinary event that impacts your ability to pay the fee or to meet the care and supervision needs of your child; or
3. You have a catastrophic loss that temporarily limits your ability to pay and creates a direct economic impact on the family. Examples: natural disasters, accidents involving or major injuries to an immediate family member, and extraordinary medical expenses.[[Section 4785(f).]]

Non-payment of the Annual Family Program Fee cannot result in services being delayed or denied.[[Section 4785(g).]] If fees are not paid, the regional center will send a letter requesting payment. If fees are still not paid, DDS can pursue collections.[[Section 4785 (d) and (e).]]

(6.42) Can my child join the Self-Determination Program?

Yes. Children are eligible for the Self- Determination Program (SDP). To get more details and see about enrolling in the SDP, talk with your child’s service coordinator. For information on the orientation you must attend, contact your Self-Determination Local Advisory Committee. See Chapter 3 for information on the SDP.