Changes to CAP I/DD (MR/DD) Waiver

The Community Alternatives Program for people with intellectual and developmental disabilities (CAP I/DD, formerly known as CAP MR/DD) is expected to change beginning November 1st, 2011. Changes to the program still need to be approved by the Federal Government, however approval is expected and the Division of Medicaid Assistance which operates the CAP I/DD in North Carolina is moving ahead as if the plan will be implemented November 1st, 2011. These changes are being made so that the CAP I/DD Waiver has similar services to the new Innovations Waiver that will be part of the new managed care system in North Carolina. Reductions in habilitation hours are also the result of cuts to Medicaid funding.

The Biggest Change:

There will be a 129 hour per month limitation on habilitation hours for adults and children.

“Habilitation” includes Day Supports, Supported Employment, Long Term Vocational Supports and Home and Community Supports.

The 129 hour limit is inclusive of all these habilitation services; the total number of hours of these services cannot exceed 129 hours.

It does not include habilitation hours provided in Residential Supports and/or Home Supports.

Habilitation hours for children in school will be reduced to 20 hours per week.

The 129 hour limit is a monthly limit; it is not a yearly average of habilitation hours.

This is a difficult time for families and people on the autism spectrum who get CAP I/DD (MR/DD). The system is already confusing and many changes are going on all at once. It is hard for the Autism Society in North Carolina (ASNC) to give good advice about the upcoming changes: on the one hand, the waiver has not yet been approved so if you make changes to your CAP plan, hours will be reduced now. On the other hand if you wait to make those changes there may be some delay in getting a new plan approved which could mean services are interrupted.

Recommendations and Rights:

Legal Services of Southern Piedmont, in consultation with Disability Rights North Carolina and the National Health Law Program, has issued the following advice.

1. Personal care: If the recipient is under age 21, EPSDT [Federal laws about early periodic screening diagnosis and treatment] applies. This means the family can request in their plan more hours of personal care than the clinical policy criteria allow and/or can ask in the plan to keep enhanced personal care because it is medically necessary.

2. If the recipient is age 21 or older, the family can ask in the plan for enhanced personal care or for additional hours as a reasonable modification under the Americans with Disabilities Act (ADA) if the recipient at serious risk of institutionalization without the service.

3. Either a child or adult can request more hours of personal care if a revised SNAP is submitted showing higher level of need than previous SNAP.

4. Habilitative services and respite: EPSDT probably does not apply. But either a child or adult can ask in the plan for more than 129 hours per month as a reasonable modification under the ADA if at serious risk of institutionalization without the service.

5. Private Duty Nursing (PDN): if the recipient is under age 21 the family can ask to keep the service under EPSDT if medically necessary.

6. PDN: if the recipient is age 21 or older, the family can request to keep the service for longer than 30 days so long as criteria for PDN are met or as a reasonable modification under ADA if at serious risk of institutionalization without the service.

7. Other new restrictions on services: the family can request a waiver of the rule as a reasonable modification under ADA if at serious risk of institutionalization due to restriction.

8. The family absolutely has the right to submit a plan asking for services in excess of policy limits in the above circumstances.

9. If the recipient is under age 21 and the plan is denied, the family will receive a written notice with appeal rights. The family must appeal to the Office of Administrative Hearings (OAH) within 30 days. The recipient will be able to continue to receive services at the prior level pending the outcome of the appeal. The appeal process starts with a telephone mediation. If the mediation is not successful, the case goes to an Administrative Law Judge (ALJ) for hearing.

10. If the recipient is age 21 or older and the plan is denied as in excess of policy limits, the provider will get notice but not the family. The notice will not include appeal rights. However, the family nonetheless can file an appeal in OAH if there is a valid factual issue for appeal rather than just a challenge to the legality of the policy. The family can argue to the ALJ that whether a reasonable modification under the ADA is needed in that case is a factual issue. If the ALJ agrees, the family can ask that services be reinstated pending the outcome of the appeal.

11. Even if the family decides not to request services in excess of policy limits at this time or not to appeal if that request is denied, the family and case manager should monitor the recipient’s conditions and health. If that deteriorates, the family can ask for the plan of care to be amended to increase the level of service and appeal if that request is denied. However there is no right to continued services pending appeal in that instance.

12. The family also has the right to challenge the plan denial in federal court instead of OAH.

13. Legal representation is likely to be needed to succeed in an appeal in these cases. Families who submit a plan that is denied and who want to appeal can contact:

Disability Rights NC (statewide) 1-877-235-4210

Legal Aid of NC (statewide) 1-866-369-6923

Legal Services of Southern Piedmont (if recipient lives in Mecklenburg county) 704 376 1600

Council for Children’s Rights (if recipient is a child and lives in Mecklenburg) 704 372 7961

Pisgah Legal Services (if recipient lives in Buncombe, Henderson, Madison, Polk, Rutherford or Transylvania counties) 1-800-489-6144

However, be aware that these nonprofit agencies have limited resources and cannot represent many of the families that contact them. Families with the means to do so may wish to contact a private attorney.

Additional Recommendations from ASNC:

14. Go to one of the information session listed below, if you can. They are free of charge.

15. Meet with your case manager and have a new Person Centered Plan prepared and ready to sign (but not actually signed), should the CAP waiver changes be approved in time for the Nov 1 deadline.

16. Due to the expected number of person centered plan revisions that will be submitted to Medicaid and Local Management Entities, the Division of Medical Assistance is recommending that services are transitioned at least 15 business days prior to October 31st. Plan revisions should be submitted no later than October 4th to allow time to complete authorization of services. Some areas of the state may be able to process plan changes more quickly and Local Management Entities may be saying its ok to wait until October 15th. You should use your best judgment in determining how long to wait before changing CAP plans; delays could mean interruption of services.

Information Sessions on New Waiver:

The Developmental Disabilities Training Institute has scheduled 5 CAP-I/DD Informational Sessions for the purpose of communicating the changes in the CAP-I/DD Comprehensive and Supports Waivers that will be effective 11/1/11. The sites for the sessions were selected to accommodate as many interested individuals as possible. Please be sure to register early and encourage others to do the same. They are free of charge, be sure to sign up ahead of time and arrive early.

Please use the links below for obtaining all the details regarding each of the events and for registration purposes:

Tuesday, Sept. 20, Greenville

Wednesday, Sept. 21, Wilmington

Monday, Sept. 26, Asheville

Tuesday, Sept. 27, Newton

Wednesday, Sept. 28, Sanford

Other Resources:

NC Division of Mental Health, Developmental Disabilities and Substance Abuse Services Implementation Updates Page (current information on services, policies)

Chart Comparing CAP Waiver to Innovations Waiver  (Note that the Innovations waiver is currently operating in PBH and will begin operation in several other LME regions in 2012. This chart does not compare the existing CAP waiver to the CAP waiver that is expected to begin Nov. 1, 2011.)

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14 Responses

  1. I’m confused. So my school-age son currently gets 30 hours per week of habilitative services (HCS). If we do nothing, then on 11/1 this will automatically be reduced to 20 hrs per week?

    His annual plan will be submitted in december. He needs more than 20 hours. We will definitely be appealing. It was only LAST YEAR that they reduced the hours to 129h/month. We could definitely live with that. In one year, they cut that by a third! Does not bode well for the our kids’ futures. They’ve tried to sub personal care for HCS hours, but come on- no one is going to subject themselves to the biting and tantrums, not to mention red tape for $8 per hour.

    And what are they doing to avail more slots? Big fat nothing. My child is nearly 7 and he’s probably one of the youngest ones I know of who have CAP. Meanwhile his classmates, all of whom are nonverbal, aggressive and seriously high risk of being “placed” languish. It’s not good, people.

    • Kristine,

      I’m working on getting an exact answer to your question. My understanding as of right now is that the weeks your son is in school, the hours would be reduced to 20 hours of habilitation per week. If you do nothing they will be reduced because NC is changing its state plan for CAP I/DD services. Based on the info from DRNC and Legal Aid you should ask for modifications to the 129 hour/20 hour limit based on his needs, especially if he would be at risk for institutionalization.

      EPSDT law may or may not apply depending on each individual case, but often for habilitation it does not apply. Other than that request for modification of the hours limit based on ADA, the habilitation hours limit cannot be appealed because the state of NC is changing the entire waiver plan and putting those limits in for everyone. Basically they are saying: this is all NC can afford to offer in a CAP waiver.

      We completely agree that it does not bode well for children and adults. It’s difficult to find anyone to do Personal Care. The Legislature has not approved funding for more CAP slots, despite everyone’s advocacy. People will be hurt by this. It’s not good.

      We do hope the managed care waiver system will open up more slots and services, but we know there is no guarantee. And recent history suggests that the state will spend less money on services not more.

      Everyone reading this: Please continue to tell your stories to lawmakers – they need to see the direct consequences of their actions.

  2. What will happen to home supports?

    • Diane: Home supports will no longer be a service under the 2011 CAP I/DD waiver. Personal care and Home and Community Supports may be used instead of Home Supports. Hours restrictions that apply to rest of waiver apply to those transitioning out of Home Supports. For example, there is a 129 hour maximum on Home and Community Supports (habilitation). In situations where an adult child lives with his/her parents, the parents or other individuals living in the household may each provide up to 40 hours a week of approved services (40 hours per “staff/caregiver”, not 40 hours per child/individual needing services). Other services can be requested when the person centered plan is changed, but services like Adult Day health or Day Supports cannot be provided by a family member. NC SNAP score determines number of Personal Care hours per month. Other supports are based on need, Home support level, other services they may be receiving, and any Medicaid CAP limits.

      • Where do you go to find the limitations. I have 2 adult children with snap scores of 4. The older one needs 12 hours a day of personal care. She has a real need of supervision all of her waking hours. She goes to day support 25 hours a week which takes all of the Habilitative services out of the home and can only receive 30 hours of personal care. She is profound, has medical and behavioral issues. Functions like a 5 year old.

        My youngest child is also profound. Functioning level of 6 years. Nonverbal. Behaviors if routine is changed or strangers are in his space.

        I have been doing home supports for both of my kids, but am now limited to 40 hours total. This is not right. They have been use to having me available night and day. All of the money from the home supports and their ssi checks go directly back into their needs. Now we don’t have enough money coming in to meet the needs of the two children. I will need to find a job if it is possible and their needs will be even greater and these limitations can come no where near meeting them.

        Do you have any suggestions? Who can I go to? What other supports are available?

  3. Diane,

    You need to contaact your case manager as soon as possible. Case managers are the ones who need to submit plan revisions and can talk to you about the amount of units of care in the plan. I should have been more specific about SNAP scores: the SNAP index determines the Personal Care hours. According to the chart I saw from the information sessions held by the Division of MHDDSAS, your child could qualify from anywhere from 80-180 hours of personal care, depending on thier SNAP index and needs. A SNAP score of 4 has index ranges from 56-156, so its difficult for me to say where your child would fall on the PC service grid. a NC SNAP index of 95-230 would qualify for the most hours of Personal Care. You really need to talk with your case manager.

    As to who to go to – that depends on what you are seeking. I frankly don’t see the state of NC changing policies by November 1st to help your situation, you can write them and tell them why this is a problem, but I don’t know that it will help. The CAP program is over budget and they need to keep it on budget. First, see your case manager to revise your childrens’ plans and figure out what will be lost. Second, depending on the result of that revision, you may need to seek legal help (see the blog post above). Third, let your NC General Assembly Representative and Senator (not your Congressperson) know what is happening and why this policy is hurting you and your children. If you need to know who represents you, you can go to http://www.ncleg.net or call me at 919-856-5068.

  4. My son is still on CAP wait list. He is not currently reccieving services because we cannot find assistance for where we are. We moved from nash to orange county last summer. We lost his respite and personal care. Personal care has been addressed several times. Thought we had companies numerous times, but they ended up not accepting insurance. Also, with the move target case management removed so I was wondering with no one to ask….Is the CAP still frozen? Or has slots been or will be available in 2012? 2013?

    • CAP IDD slots are generally still frozen. With the transition to a managed care system, Local Management Entities who have become Managed Care Organizations are taking more control over the program that used to be called CAP and is called “Innovations” under managed care. LME MCOs like the one that manages services in the area you now live in are re-assessing everyone in the program and those on the waiting list. Sometimes this means slots will open up, sometimes not, but the state has not funded any more slots so the only funds for more slots would come through management of the current funds. Some LME MCOs are finding that they can serve more with less, some are finding that people on CAP or waiting for CAP/Innovations need even more services than expected.

      Jennifer – I encourage you to talk with one of our Parent Advocates to make sure that you are getting the right information about managed care changes that are specific to your situation. Please call one of our central region Advocates at 919-865-5093 or 800-442-2762 (Nancy, Judy or Jan).

  5. I am the legal guardian of my m r d d i Cap recipient daughter,who lives in my home and is 22 years old.

    What I would like to know is,

    Does the legal guardian have to have a high school diploma to work with the family member? since the waiver has changed from,Home Supports to In-Home Skill Building/ Personal Care?

    • Celeste – thank you for calling me this morning, and as I mentioned I am still looking into this issue. For other people reading this blog: The CAP and Innovaitons waivers have required for several years that both outside staff and family members have a high school diploma to be a paid provider of servcies for individuals who are in the CAP IDD or Innovaitons waiver programs. Other Medicaid services, for example regular Medicaid Personal Care Servcies and other Medicaid in-home services, do not require the person who is providing services to have a high school diploma, only that they be either 18 or have a high school diploma.

      • Hi will you post a copy of the policy document on this sight for us all to

        see what the criteria is for a parent or legal guardian/power of attorney

        to work with a cap/comprehensive waiver recipient in the guardians home?.

        It will be greatly appreciated.

      • Celeste, we will work on posting some links here, but because this blog article posting is about the CAP program, not Innovations, I’m concerned that some of the information in this post may no longer be helpful for your particular situation. We will work on providing some updated info about Innovations in a future blog.

  6. I have another concern, If east point denies an extra 40 hrs or services,
    I was told that east point would only give notice to the provider.

    Well east point has not given me any sort of confirmation regarding my daughters services.

    But the care coordinator from east point
    issued to my family, presented me with a PCP action plan stating that my daughter had been awarded,

    172 hrs per month of in-home skill building/ and 172 hrs of personal care

    Why has east point not given me a written confirmation of these hours?

    I sent a letter to the director of east point Ken Jones with these same questions and issues, he did not respond, instead he forwarded

    the letter to the supervisor of care coordination,and they never responded.

    How do we truly find out or who do we inquire about hours and services

    especially if the parent/legal guardian is the one that requested the hours?

    • Celeste, as you know, and as we have spoken about on the phone, these are complicated issues. You have done all the right things in contacting the LME MCO and in asking for a response from both the DD specialist as well as the care coordinator. If you are still having problems getting these questions answered, you may want to give Katie Holler, your local Parent Advocate a call back and ask for her assistance in getting the information from Eastpointe. I think you have Katie’s number, but if not she can be reached by leaving a message at 800 357 2762.

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